Web Based Simulation Games With Multimedia E-Learning Environment

Web2.0-based medical education and learning

Web Based Simulation Games with Multimedia E-learning Environment

Jiri Kofranek, Charles University Prague, Prague, Czech Republic.

Sept 18, 9:00AM - 10:30AM MaRS CR2 (Research)

Jiri Kofranek, of Charles University in Prague, gave an insightful presentation on the use of simulation games in medical training. Today, modern medical education is experiencing reform through the use of such interactive programs.

The strength of such programs is that one can test the behaviour of individual physiological subsystems, under both normal conditions, and conditions of stress (such as when in a diseased state). Creating such tools, however, is not as simple as one might think. The tools require extensive mathematical modeling which involves converting real life things into mathematical equations – a process referred to as formalization. Using this methodology, for example, one can model the body’s systems mathematically. This has, in fact, been done for various body parts.

One of the results of Kofraneks work is the Atlas of Physiology and Pathophysiology, a web accessible teaching tool combining interactive multimedia with simulation models. This has been used in biomedical education at Kofraneks current University.

The presentation was full of technical jargon and computer science lingo. The overall effect was that I felt completely in awe of the technological capabilities available to clinicians and medical researchers in this day and age. However, such advances require highly skilled multidisciplinary teams.

I was wondering, while listening to the presentation, about the notion of quality assurance. How are the developers, those that create the models, convinced that the model they have created is analogous to real life? Furthermore, is it really possible to model real life systems that are as complex as our body parts? Even a simple cell could take millions of researchers decades to understand completely. However, I do not want to lose track of the goals of such research. I can see a definite application to such research and development and hope that one day my own physician will have taken full advantage of such technology and tools!

Ethical & Legal issues, confedentiality and privacy

Presenters: Joan H. Dzenowagis; Kevin A. Clauson and Francisco J. Grajales

Francisco Grajales III, Joan Dzenowagis, and Kevin Clauson took an interactive approach in order to present their ideas about Ethical and legal issues in the realm of eHealth, by conducting a real-time survey, using an audience response system. The audience participated by responding to the survey questions anonymously. The objective of the survey was to elaborate on the presenter’s research hypothesis about the nature of ethical and privacy issues with the use of social media in healthcare. The presenters highlighted the fact that the participation of the audience in the survey will benefit the 2.0 community, and that its results will help identify issues and serve as a basis for further research.

The audience for this presentation was a good candidate for a survey of this sort as it included people from an academic or research background, students, trainees, and physicians. In essence, a majority of the individuals was expected to be socially active in the online community. Out of these people, there were 38% participants who spent 5-8 hours on web on average every day, which is what one would expect for the type of audience that was present. However, the fact that about 4% of the participants spend less than 1 hour on the internet on an average day reminds us of the fact that the entire audience was not biased for or against the use of technology, and their ideas may fall in a well-distributed curve.

98% of the participants responded that they have used Web 2.0 services, while the majority of them have used more than one type of such services. There were 90% participants who used social networking, followed by blogs and wikis.

An interesting idea presented by the presenters was that with the rise of social networking, more and more people would share their personal health data using a 2.0 site. But the presenters raised the question as to whether we even raise the question of ownership of the data that we are submitting online? It was not shocking to find that only 54% of the participants thought that the individuals themselves own their health data submitted on the web. I presume if this question was asked 10 years ago about submission of one’s own health data to someone, a vast majority would have thought that they still owned their own data. The fact that we see 46% of the audience did not think they owned the data anymore...this points us to the direction that either the war against privacy breach is all but won, or that in a digital world where data has no originality (as it can be duplicated a zillion times without losing anything from it), we do not care about who owns our personal data anymore. So does that mean that an electronic health report of mine can be owned by both myself and a web site owner?

When asked what the audience thought about privacy violation when data is viewed or used by someone else, 54% of the audience thought that this ‘someone else’ must be a third party who is not in the “Terms of Use”. But in the technologically advanced world we live in today, a checkmark in “I accept to the Terms and Conditions” before continuing a software installation or the use of a website means just that...it’s the ONLY way we can continue...so lets just accept the terms and conditions without questioning it. Personally, the question of “what is actually in that terms and conditions contract?” never came to my mind...perhaps due to a mixed feeling of “would they even care?” and “the language in terms and conditions are is not human-readable”. However, one would expect that a responsible web service provider would not just give up our private data to a third-party – they would rather write the terms and conditions better and make us approve it!

Overall, the survey-based-presentation unveiled one truth – that we are yet to fully understand and appreciate the ethical and privacy issues that we face with extreme social networking in the virtual world. There are questions such as ownership of data that cannot be easily answered. However, at the same time, there is an unstoppable movement towards networking and weaving all sorts of information about everyone. Are we, as the consumers as well as providers of these personal information on the web, losing sight of some of the constraints that advancements in sharing information should have?

Ethics 2.0: Implications for Connected Health (Panel with interactive audience response system)

Presentation Topic: Ethical & legal issues, confidentiality and privacy

Abstract

Panel Members:
Joan H. Dzenowagis: World Health Organization, Geneva, Switzerland

Kevin A. Clauson: , Nova Southeastern University, College of Pharmacy, Palm Beach Gardens, United States
Francisco J. Grajales III: (Gaduate Student), eHealth Strategy Office, University of British Columbia Faculty of Medicine, Vancouver, Canada

The premise of this oral presenation by the panel was whether or not Social Web demand a new ethical paradigm? In the review of this question, Medicine, Law, Journalist and Business are all driven by laws and standards. Are these sufficient in this era?

Does the social media in health pose special challenges?
What is "correct and proper" behaviour?
How do we judge/designate quality and reliability?
Whom do we trust to define it?
How do we encourage and enforce it?

To explore these ethical expectations of media in social media a total of 56 members of the attending audience were asked to actively participate through the use of an electronic interactive audience response system. The composition of the audience was 29% representing academic and researchers, 27% representing students and trainees, 16% representing medical doctors, 5% representing patient and patient advocate, and the remaining percentage other business or IT professionals.

The responses were anonymous and the results will be used to help identify issues and serve as a basis for discussion and may be further disseminated (eg. publication). The benefits to the audience were to clarify and share ideas.

Survey Results

Some results from the survey reflected the following:

The survey measured the average hours per day spent on the web which represented a total of 68% for a range of 1-8 hours. High usage 2.0 services include social networking, blogs, wikis, forums/listervs and photo sharing.

Also, information was polled on health care providers (HCP) responsibility in disseminating information on the web. With regards to how HCP co-consults via 2.0 tools were considered 25% agreed that this would be acceptable if patient names are not disclosed, 21 % agreed that platform providers could keep data private, 23% indicated if permitted by hospital/HCP assoc guidelines. Surprisingly a total of 25% of respondents said "I don't know".

32% of respondents agreed that Pharmacist posts on a social networking site and 30% agreed that discussion of drug therapy on a pharmacist’s blog are most likely to establish legal pharmacist-patient relationship and duty to warn. 43% of respondents agreed that "Virtual Samaritans" are ethically responsible for the medical advice they provided online if they were either a patient or a registered clinician. Where web 2.0 tools are used to conduct study such as the Second Life obesity study, 39% agreed that virtual informed consent (IC) was no different from offline IC in regards to rights and responsibilities for both subject and researcher.

Discussion and Comments

The panel discussion was centered on concerns about health data ownership, responsibility, liability and rights, affect of privacy concerns and trust in using the web for health information. Liability issues relevant in the virtual world where looked at with a survey and interactive discussion. The comments below will be a mixture of my own opinion, abstract information and discussions held.

Web 2.0 -----> Medicine 2.0 ------> Ethics 2.0

Both patient and HCPs now have more to be concerned given the power of the tools at our disposal to aggregate or access data, utilize the virtual space to provide information and service faster and the extensive growth of social media. The potential of the web has been growing but the legal, regulatory and ethical issues around use has not been managed to keep pace with this forum and still existing in its infancy state.

From the abstract, internet tools and features now include creating new types of relationships where health data are generated and shared, such as with bi-directional advising on health matters and problem-solving health related dilemmas. This has now been evolving from provider-patient to provider-e-patient relationship as pointed out by the panel.

So clearly the respondents supported the notion of some degree of ethical concerns, given that 80% of respondents agreed that the statement "health information quality is not a societal concern; it is "user beware"" is considered false. In terms of data protection in web 2.0, 35% of respondents believed that benefits are worth the risk, 25% believed that protection is impossible and 24% that privacy depends on the business model. Regarding internet and health, majority respondents indicated that national governments and users have the primary responsibility to protect the consumers.

So we are now faced with the challenge of ensuring that such issues as "do no harm" meaning will not change in the context of the virtual world. Based on the Tarasoff rule, where a patient told his psychotherapist that he intended to kill an unnamed but readily identifiable woman. Subsequently, the patient killed the woman. In the online world, the challenge now has now presented concerns such as where two prescriptions are received from the same physician for different problems or a virtual related case such as the MySpace suicidal case.

The responsibility will continue to rest with the HCP as 43% of respondents agreed that "Virtual Samaritans" are ethically responsible for the medical advice they provide online if they are either a patient or a registered clinician.

The concern regarding the ethical duty for someone in an online forum on such matters as suicidal issues was discussed. It was stated that a 24hr moderated board may introduce liability to warn and each website has to establish its own rules to handle this. Further enquiry arose as to how this would be handled if this were an international forum. How do you identify this person?

Discussion continued around the legal issues on this where it was stated that the terms of conditions get negated and the legal system becomes the preceding factor based on practice.

54% of respondents indicated that “individuals are the owners of personal health data that is posted on 2.0 sites” and the same percentage also agreed that “privacy is violated when data are viewed” or used by "Any third party not in terms of use."
A member of the audience commented that he merely said Yes to terms and conditions for the services online and has been dependent on privacy whistle blowers to point out issues. This could be further supported in the example of the privacy breach concerns on FaceBook highlighted by the privacy commission office. However, as web 2.0 and 3.0 has continued to gallop, ethical concerns still have not been addressed as taken from abstract such as:

• Health-related data are made available, or potentially available, through the actions of individuals, communities or websites.
• Vast repositories of individual health "data" are being generated by users who voluntarily post and share personal information in various forms of virtual communities.
• Privately-owned websites may collect, store, share or sell health data as part of their terms of use.
• Individual search data and patient-generated content are also aggregated and characterized by search engines.
• Third parties may have access to the data, without the users’ knowledge or consent, to study, advertise, profit from, and target consumers.
• In addition, publicly available application programming interfaces or embedded search capabilities enable any person with basic computing skills to obtain access to data and use or misuse it. Eg DNA data blocked after genetic information was discovered not be be as anonymous as previously believed.
  
  
  
  
  

  Final Comments

  There has become a paradigm shift to the patient-provider relationship and the sense of a cavalier attitude to how much information is exposed without fully examining the effect on society. What happens to life "offline"?
  
  Have we been using old world methods to control current and futuristic legal issues around the use of the internet? Has the legal system become too slow to respond to the issues on the internet? As patients and consumers become more avid users of the growth of web 2.0 and 3.0, it has become more imperative for the examination of ethical concerns to be accelerated in addressing these issues in the health environment to preserve the provider-epatient relationship of the empowered patient/consumer.

  
  

  
  

  
  

Ethical & legal issues, confidentiality and privacy

Ethics 2.0: Implications for Connected Health (Panel with interactive audience response system)
Joan H. Dzenowagis*, World Health Organization, Geneva, Switzerland Kevin A. Clauson*, Nova Southeastern University, College of Pharmacy, Palm Beach Gardens, United States Francisco J. Grajales Iii*, eHealth Strategy Office, University of British Columbia Faculty of Medicine, Vancouver, Canada.

This session being a panel discussion was certainly not like a typical presentation where speakers would provide vast amount of information on the subject matter to the audience with only few minutes at the end for discussion. Rather through this session, the presenters (as a panel) engaged with the audience through the interactive audience response system in analyzing and contemplating on the ethical issues pertaining eHealth.

Basically, a brief introduction on the ethical issues of confidentiality and privacy was followed by a series of questions and concerns that drive the changing patterns of interconnection in the health domain in the Web 2.0 generation. Are the so called “virtual Samaritans” ethically responsible for the advice they give to patients?

Moreover, as internet users, we voluntarily post information about ourselves in the attempt to gain more information, as well as for social networking reasons in virtual communities. Do we actually read the ‘terms of agreement’ (in case of watching certain YouTube clips there is actually a set of NINE user agreements) before clicking on ‘I accept’? It appeared from the audience responses that usually we proceed with our actions on the web in the hope that someone out there will ensure that our information is safe and protected.

The series of questions in the audience poll triggered us to reflect upon the users’ knowledge or consent and the risk of third parties having access to our data which may be misused! Therefore how do we address the concerns about health data ownership? Especially in case of HEALTH in Web 2.0 how should providers, or authorities concerned protect consumers (patients, caregivers, other users). I would also be interested in identifying what additional measures need to be undertaken in order to ensure privacy of patients health records and the challenges faced in eHealth.

Some of the highlights from audience response poll-

On an average day, almost 38% of the participants present said they spent almost 5-8 hours on the web while only 4% seemed to spend less than an hour a day on the web. Interestingly, more than 80% of the audience present had contributed content to social-networking which I believe is food for thought for ‘consumer health informatics’ in light of privacy and confidentiality.

When asked who is the owner of personal health data that an individual posts on a 2.0 site, 42% answered ‘site owner’, 19% thought it was the ‘company who pays for the data’, 54% thought it was ‘the individual’, while 25% perceived that ‘the individual gives up any rights when they share their data’ and a good 30% responded as ‘I don’t know’!

Majority (54%) of the audience believed that privacy is violated in social media when any third party not in ‘Terms of Use’ views or uses the data that internet users share via online tools. My question once again would be “How many of us read the ‘Terms of Use’ that we so rely upon?”Also, a similar percentage (53%) of the audience felt that depending on their ability to manage, the healthcare providers (HCP) should keep their personal and professional web identities separate. 34% preferred institutional policy or boards to manager personal and professional web identity standards.

For obtaining informed consent (IC) in a virtual world, 45% of the audience perceived reviewing IC with subject via voice chat as the most ethically sound method of obtaining IC on the web.

Finally, regarding internet and health, when asked who has the primary responsibility to protest consumers, a large majority said the national governments should be responsible, and a slightly less number of audience felt that users themselves should take primary responsibility while only a few viewed this as the service providers’ liability. Last but not least, 80% viewed health information quality as a social concern.

While the above statistics is collated from a limited number of professionals, academicians/researchers and grad students present in the conference auditorium, I believe these data will trigger future research in specific areas of internet-based health information sharing and retrieval calling for more intellectual dialogue and debate enabling users to become more knowledgeable and make informed decisions in a virtual world.

Speaker Peter Murray

Peter Murray the Director of the Medical informatics Association did a brief talk about the International Medical Informatics Association.
website: http://www.imia.org/
the Association plays a major role in the application of information science and technology in the fields of healthcare and research in medical, health and bio-informatics.

The basic goals and objectives of the association are to:
promote informatics in health care and research in health, bio and medical informatics. advance and nurture international cooperation.
to stimulate research, development and routine application.
move informatics from theory into practice in a full range of health delivery settings, from physician's office to acute and long term care.
further the dissemination and exchange of knowledge, information and technology.
promote education and responsible behaviour.
represent the medical and health informatics field with the World Health Organization and other international professional and governmental organizations.

He mentioned about the IMIA News. The new online news and information service from the International Medical Informatics Association (IMIA – http://www.imia.org/). The purpose is to provide items about IMIA, its members, and its activities, as well as material from the wider health and medical informatics communities globally.
He also mentioned about the IMIA Medicine 2.0, Medinfo 12-15 September, 2010 in Cape Town, South Africa that will host the 13th International Congress on Medical Informatics from the 12 - 15 of September 2010.

http://www.peter-murray.net/

peterjmurray@gmailc.om

E-patient Dave Debronkart, Society for Participatory Medicine, Nashua, NH, United States

Keynote: "Gimme My Damn Data!"

He covered real-world examples of how inability of patients has cause harm and how ability of patients educate themselves has improved outcomes.Dave Medical condition: Stage IV kidney cancer. In 24 weeks. He learned everything about his illness using the Internet; he used all the possible recourse on the web. He became a blogger about the health care. He is now one of the most active patients advocating about health care.Foundation Principles Patient is not a third-person word.The right of a desperate person to try to save themselves The privacy and security would take a whole different meaning when the live is at stake.The healthcare is in many ways far behind other industries.Dave explained about his illness, he illustrated a picture of his shoulder. He mentioned that where they found out about his kidney cancer.He searched all the websites to educated himself about his cancer condition.He was very emotional when he was talking about his challenges and what he emotionally went through during his hard days of battling with cancer.He talked about online patient communities and how other patients communicated and spoke about their common conditions.He talked about the Information-age medicine.He mentioned that Internet has changed everything in terms of patients’ access to their health information.He mentioned about his work in the high tech industry. Centralization followed by decentralization: he talked bout the data being mobile today through technological innovations.He illustrated a slide of the patient of the future:Dave talked about data quality risk: the MIB (privet insurance company).Lessen learned was to check for errors he said.He talked about the owner of heath data, whose data is it anyways, patient’s, provider’s or hospitals.Dave’s website: ePatientDave.comSummary of the e-patient, Dave talks:· One of the most fundamental rights is to be fully engaged in one's well-being, especially in moments of disaster when a life is at stake·Experience with moving patient data from hospital to Google health creates concerns about the managing data quality· Patient want to be able to audit, view, make comments, and export things for the purpose of sharing with other health care providers·Advocating for setting policies around this issue.Discussions & Questions:

Comment# 1 How do you get the data to patient? We need policy not technology.Health data rights comment# 2 mentioning about upcoming conference in Philadelphia

Comment#3 a person from Italy. How can physicians work with their patients to empower patients?

Comment# 4: the peer review process lag time preventing from using the evidence for treatment.

Comment# 5: there should be a guide for patient

Comment#6: poor literacy of patients. Many people are not literate enough to educate themselves about their conditions.Comment#7: kids are better than adults in using Internet resources. Therefore, kids can be a way of teaching adults.Comment#8: privacy, security and confidentiality issues. How to change this paradigm?

Use of the Internet for health-related information in Japan by Takahashi yoshimitsu

An increasing number of people use the Internet for health information. But how their online information seeking practices affect the ways they utilize health care? In Japan, cell phones are also widely used to access the Internet. But how Japanese people use cell phones for health information seeking practice on the Internet is unknown. This study examined how Japanese people use personal computers and cell phones to gain health-related information by conducting a cross-sectional survey with randomly-selected 1200 respondents who aged 15-79. Logistic regression analysis was employed to analyze the relationship between health information practices and user characteristics such as age, sex, income, education level, self-reported health status and place of living.

The major findings:

-- Mean age 46.3
-- 49.6% male, 50.4% female
-- 18.7% obtained at least a college education
-- 41.0% at least six million yen (1CDN= approx. 85yen) as household income
-- 23.8% used PC for health information

-- Access via PC was significantly related to;
-- 50-60 and 65-74 and over 75 year’s old
-- Over 10 million yen income
-- 13-15 years of education, and over 16 years of education

-- Access via cell phone was significantly related to;
-- 50-64 year’s old
-- 6.4 % use cell phone for health information on the Internet, while 23.8 % use PC. Japanese people use cell phone for the purpose of communicate with their family and friends rather than for collecting health information.
-- Prevalence of internet use via PC is lower in Japan in comparison with the US and Europe

One of the audience mentioned the studies by Ito and Okabe, which also focus on the use of cell phone in Japan. The comparison of the data may generate interesting findings.

IMIA Medicine 2.0 Award

As part of the closing ceremonies of Medicine 2.0'09, the "IMIA Medicine 2.0 Award" for the best paper in the research track was presented. The US$ 500 award for the winner is given by IMIA (the International Medical Informatics Association - www.imia.org), a co-sponsor of the event, to be used to facilitate development of a paper to be submitted to a peer reviewed journal for publication.

All eligible abstracts were considered, and after a careful process of judging, by members of the IMIA Web 2.0 Taskforce, of the content and quality of the submitted abstracts, a shortlist was developed. Each of these were then judged with respect to the content and delivery of the presentations and the interactions of the presenters with the audience in respect of answering questions. All the shortlisted presentations were very good, and the choice was difficult to make.

The winner of the IMIA Medicine 2.0 Award is "Pandemics in the Age of Twitter: Content Analysis of “Tweets” During the H1N1 Outbreak" by Cynthia Mei Chew and Gunther Eysenbach. Cynthia presented an interesting study, demonstrating practical use of Web 2.0 technologies to address health related research. The scientific quality of the research itself was good, the methods and results clearly presented, and Cynthia was both confident in her manner and showed that she had a detailed understanding of the study, its implications, and further work that might be needed. The work would clearly benefit from wider publication. Well done, Cynthia. Gunther accepted the award on her behalf, as Cynthia was not able to be at the closing.

Other highly commendable presentations included "What Are Young Adults Saying About Mental Health? a Qualitative Analysis of Internet Blogs" by Madalyn Marcus and colleagues, and "Readability of the Top 50 Prescribed Drugs in Wikipedia" by Devin Pelcher and colleagues.

Readability of the Top 50 Prescribed Drugs in Wikipedia by Devin Pelcher

Without a doubt Wikipedia is one of the most frequently viewed online resources by information seekers. It is quick, accessible, and relatively easy to understand. In fact, because of its popularity, Wiki article always appears as one of the top results of major search engines. But how about the medical information on Wikipedia? Is the information about common drug on Wikipedia consumer-friendly and easy to understand?

To assess the readability of Wikipedia’s drug information content, Devin analyzed the 50 most commonly prescribed drugs in the US by employing Flesch-Kincaid Grade Level and health information readability analyzer which Devin developed. As a result, Dyazide and Zestoretic appeared as the easiest to read, while Lansoprazole and Hydrocodone emerged as the most difficult primarily because of the documents’ vocabulary, style, cohesion, syntactic, lexical and style. Devin concludes that, primarily because of the semantic reasons, 50 Wikipedia entries appear difficult to read for intended audience. He recommends the improvement of the lexical and syntactic constructs while maintaining cohesion to enhance consumer comprehension.

Several people asked interesting questions after the presentation. To the question about the significance of studying Wikipedia, Devin responded by reminding the audience of the convenience and accessibility of Wikipedia. In many cases when people encounter some health problem and health information needs, they are away from health care provider. Or the hospital may be already closed. Wikipedia is free from time or geographical constraints. Consequently many patients search for medical information on Wikipedia. Because of its frequent visitors, it is important for healthcare providers to know what is written on Wikipedia. Second question relates to the information accuracy of the articles of Wikipedia. Davin stated that, although it is an important issue to explore, accuracy was not the focus of his study. His study focuses on how consumer-friendly the information on Wikipedia is.

What Are Young Adults Saying about Mental Health? A Qualitative Analysis of Internet Blogs by Madalyn Marcus

Despite high prevalence rate of mental illness among young adult (1 of every 4 young adults will experience a mental disorder in any 12 month period.), early intervention is under-utilized, and unmet care needs exist among this particular population. Moreover, little research has been done with regard to the actual experience of young adults experiencing suffering from mental illnesses. Madalyn Marcus (York University, Toronto) employed a qualitative method to examine the blogs of 8 young adults (6 female & 2 male) aged 18-25 living with mood and anxiety disorders in order to identify their needs and want regarding care and barriers to accessing care.

The major themes discovered through the analysis of 8 blogs are sense of powerlessness over mental health problem and a strong sense of disconnection from others. For example, many bloggers express the feelings of being oppressed. Talking about the mental issues completely dominate their life. “The biggest victims are lovers, friends, family, my working life, education and memories”. Some blame themselves by stating “I should be able to control it – you brought it on yourself “. The sense of disconnection or alienation is recognized in their assumption or perception that others don’t connect with the depressed. Therapists or care-providers are unapproachable, or they are not really interested in the issues of the depressed. Some bloggers even feel that the professionals are pushing medication on them. However, there are some moments of hope, too, especially when the bloggers experience the moment of connection. “I feel good when I connect myself with others”. “Speaking with professional worked.” “Internet is the only way of socialization.”

Marcas offers a specific and useful set of recommendations: designing of community systems that aim to decrease young adult sense of disconnection, development of alternative or supplementary forms of support in a non-medical environments, capitalization on peer support, provision of vehicles for communication, friendship, support and connection, and education/awareness training to those around the sufferer with regard to how to best offer support and to reduce stigma. As an attendee, I had the same question as some of the audience. I wondered how those 8 bloggers considers the role, meaning, and value of blogging in their life. Blogging is a public medium. I wondered who those bloggers are expressing their thoughts to and how the potential audience in the bloggers mind can affect their writings.

Computer-Based Interventions for Sexual Health: A Systematic Review by Julia V Bailey

Julia V Bailey (University College London) sees huge potential for health promotion via computer-based technology for its advantages of convenience, interactivity, and multi-media features. She presented the results of a systematic review of interactive computer-based interventions for the promotion of sexual health. The examination of electronic databases, grey literature, trial registers, and reference lists of published studies yielded 11.000 citations from 1987 to 2007 which include 15 randomized controlled trials. The focus of interventions includes the prevention of sexually transmitted diseases, such as HIV, unwanted pregnancy, responsible sexual behaviour, and preventing sexual assault. The examples of the interactive functions of the interventions are feedback on personality traits, motivation, and behavioural skills and feedback on virtual decisions. Some interventions have multimedia features, such as games, stories, virtual characters, animations, music and cartoons.

The study examined two research questions: whether or not interactive computer-based interventions are effective and whether or not interactive computer-based interventions are as effective as face-to-face interventions, such as lecture in classroom. With regard to the first question, meta-analyses indicate a moderate effect on sexual health knowledge, a small effect on self-efficacy and safer-sex intentions, no significant effect on sexual behaviours and insufficient data for analysis of biological or economic outcomes. With respect to the second question, meta-analysis shows a small effect on sexual health knowledge. There is insufficient data for analyses of self efficacy, intention, behaviour, biological or economic outcomes.

Bailey concludes that interactive computer-based interventions are feasible. They are, in particular, effective in gaining knowledge about sexual health. Future studies should take a holistic view on sexual health which takes into consideration various aspects of sexuality, such as emotional, mental, social well-being. One of the attendees of this presentation asked for the actual examples of such approach, and Bailey responded by mentioning the examples of discussing relationship satisfaction in general or what it means by “good sex.”

Mobile Devices for Nursing: a Comparative Human Factors Evaluation

Presented By: Tara McCurdie

Introduction of ICT in healthcare enables the availability of more and more communication technologies for use by healthcare professionals at the point of care. It is thus very important to choose the right device that will enable accessing this data in the most efficient and secure manner. Despite mobile phones seem to be promising in delivery of information at the point of care, the adoption rate still seems to be low. The main reason for this lack of adoption rate is the ‘usability’ of these devices. Tara McCurdie in her presentation discusses about the nursing PDA pilot project introduced by MOHLTC. The purpose of this project is to improve evidence and innovation at the bed-side and also to access Web-based nursing applications that enable nurses to read Medline articles, share these articles with other fellows and also to be able to communicate with other nurses using emails. This will help them provide evidence based medicine at the POC.

In order to determine the right choice of device, a step-by-step usability and heuristic evaluation was conducted by the team at the Centre for Global eHealth Innovation to compare 3 smartphones (Blackberry, iPhone and Palm treo) and 2 PDA devices (Nokia N810 and HP iPAQ) based on the context of use of these devices by the nurses.

In this study, the heuristics evaluations were conducted by heuristics experts. The usability testing was done through observation while the nurses used these devices for emailing, calculating BMI, and doing two online database queries. The usability testing showed that the nurses performed best with Nokia.

The nurses also completed a survey and post-use debriefing about their experiences. This usability testing method reminds me about a study in using multi-perspective methodologies such as structured interviews, observation, document reading, and technology acceptance to evaluate the use of a device. I feel that the study for evaluating the mobile devices for nursing use could also use a similar multi-perspective methodology for more detailed findings.

The heuristics evaluations determined that BlackBerry had the least number of issues identified, Nokia had the most overall issues with mostly low severity issues, iPhone and the iPaq had the most number of medium severity issues, and Palm had the least number of mostly high severity issues.

It is interesting that in the study, even though the nurses performed the best with the Nokia device, which surpassed the performance that they had produced with the Blackberry, the nurses still preferred using the Blackberry phone. Although some nurses complained about the weight of the Nokia phone as one of the reasons why they had complained, there is still a bias among the nurses that can be sensed. Since Blackberry is the market leader in mobile computing and there is much hype in the market about Blackberry devices, there might be some bias involved in the nurses’ choice of the device.

Further to the findings of the study, I would have liked to see some use of accessibility components in the usability study for the mobile devices. Since mobile computing uses smaller screens with smaller amount of data available, and since each device has its own propriety interface design, the study would have been more complete with accessibility evaluations about the text sizes, color-blind friendly designs, and so on. In addition to this, an ergonomic evaluation of the devices would have made the study more complete, since each mobile device has its own physical design with fancy keyboard layouts.

One more thing I would like to mention is that in future, nurses may be using custom applications such as perform clinical documentation using these devices. How can this study be applied in that area? Furthermore, design of these applications must follow the system requirements for each of these devices, which may vary from device to device. As a result, the usability of the applications made for the devices may also vary based on what the applications have to offer to the nurses.

NextHealth Model

Jen McCabe

Jen McCabe presented ideas on NextHealth, her conceptual model of consumer-centric care. Jen is a very forward thinker. Her commitment to patient advocacy was very inspirational. Her model showed consumer centric care at the intersection of the (patient) versus (provider) axis and (mortar and brick) versus (virtual services) axis.

She spoke the internet changing the role of the patient (consumer) and health care provider. She described Health 1.0 as content only (internet websites such as WebMed).

As people started to establish on-line relationships, Health 2.0 incorporated content with community, collaborating and engaging in care (such as, DiabetesMine.com).

Jen argued that Health 3.0 will incorporate commerce with value based interactions, building business models based on consensus, accessing content and forming groups (e.g Carol.com, Organized Wisdom).

And lastly, the future Health 4.0 connects all the earlier phases, where patients can move smoothly from on-line to off-line care, where patients and health care providers work collaboratively in a continuum.

Her conceptual ideas resembles the "pharmaceutical care model" proposed more than a decade ago in Pharmacy for patient-centred care. We have not reached this yet.

While Health 1.0 and Health 2.0 has been moving us towards "participatory care, bridging patient choices with provider services", whether incorporating "business" or "commerce" will drive us towards Health 3.0 and Health 4.0 remains to be seen.

During Jen's talk, she used "patient" and "consumer" interchangeably, that is, "patient is the consumer". But if the patient becomes the consumer, does the consumer make all the choices on their medical care? How does the professional judgment of the health care professional play a role when they differ from the consumer's choice? The term "patient" assumes some authority by the health care professional to provide care. Whereas, the "consumer" retains control of choices in their own care.

Another limitation to Jen's use of business principles with her health care model relates to the providers. Health care professionals take a Hippocratic oath which differs from other service providers. If health care was merely a "value based commercial entity" as Jen put it, would "health care providers" still be considered "health care professionals?" Can we appropriately apply business principles to health care?

While I now have more questions than answers, her ideas has triggered me to rethink my concepts. Great talk!!

My disclaimer: I am many steps behind Jen.. my brain does not operate at the same speed. This blog is my best attempt at providing a critique of her concepts. You might want to take a look at her article for yourself to gain further insight.

Her abstract is available on the Medicine 2.0 website.

PatientsLikeMe

Patients Informing Practice: Post-marketing Drug Data in PatientsLikeMe, a Patient-Centred Online Community
Speaker: Jeana Frost

Jeana Frost, winner of the JMIR Medicine 2.0 award 2009, presented research data collected from PatientLikeMe website.

Noting that drugs are often used off-label with limited clinical data, Jeana Frost presented an alternative approach to understanding drug use and effects using a patient-centred on-line platform called PatientsLikeMe. Using information shared on the social media, Jeana took experiences created in the community to generate quantifiable data.

PatientsLikeMe was started by two brothers who identified the need for a patient resource when one brother got ALS. The tool allows patients to share information on drugs, symptoms, answer patient questions, report efficacy on treatment. Jeana argued that "community knowledge can affect the treatment of the patient".

Using data from PatientsLikeMe, 602 treatment histories and 220 evaluations of amitriptyline were analyzed in five patient communities (MS, Parkinson's, Mood Conditions, Fibromyalgia and ALS). She found that 80% were using the drug for indications other than depression (depression is the drug's only approved indication). Users reported taking amitriptyline for pain, insomnia, excess saliva, depression (rank 4).

Jeanna noted that off label uses of drugs can sometimes be the drug’s side effects. Christine Thoer also made this comment when she presented her research yesterday at Medicine 2.0.

While credibility of user profiles takes effort and time to develop on PatientsLikeMe, according to Jeanna, I am not sure how data gathered from web identities can be used to generate statistically relevant results.

I also question the relevance of reports from five user communities (e.g., MS patients will amitriptyline for pain and not bed wetting). Even if the data was reliable, experiences from five communities creates a selection bias and can not be extrapolated to the larger population.

PatientsLikeMe can be a very useful patient resource and support tool. I agree that this forum could generate very useful information. Reports on patient experiences can be very important in areas where documented research is lacking. It can also uncovered side effects that that patients are less likely to report in clinical trials (sexual dysfunction). It may even inform and stimulate research, particularly if Pharma companies find creative ways to capitalize on the off-label use (e.g., buproprion, an antidepressant remarketed for smoking cessation).

For additional information, please see her abstract.

Designing a User Centric Remote Patient Monitoring System to Facilitate Heart Failure Self-care

Presented By: Emily Seto

With the rise in chronic diseases it is becoming much more difficult for patients to manage their own care. Heart failure is one of those areas where the patients generally have a tendency to poorly perform self-care. Some reasons for this would be the patient’s non adherence to perform certain self-care tasks such as measuring their weight and diet, non adherence to changing their lifestyle and have less confidence in performing self-care etc.

Remote Patient Monitoring has the possibility to be able to play a key role in order to help patient in performing well guided self care. Emily mentions that RPM is a tool that have a potential to avert further deterioration of a heart failure patient’s condition and to avoid cost of re-hospitalization. Emily demonstrated in her presentation a Remote Patient Monitoring System to help cardiac patients facilitate ‘Heart Failure Self-Care’ developed by her team at the Centre for Global eHealth using user-centered design approach.

The architecture of this system included the Bluetooth enabled monitoring devices for monitoring of patient’s weight, blood pressure, heart rate, rhythm etc. The data from the device is sent from the device to a mobile phone and is then transmitted to the server accessible by their care-providers. The system provides patients with instructions and alerts on their mobile devices by incorporating decision support capabilities within the system. It also sends alerts to the care-providers incase of abnormal trend in patient’s results. The benefits for patients to use such system would be reduce travel time to heart function clinic, provides them a central repository of their data, enables real-time sending the data to their physicians and also helps the patients be on top of their own condition.

Emily mentioned about the patients’ concerns about false alerts to be sent to provider. In addition to that, I would like to raise the concern about rating the alerts. The more we bring healthcare related devices to the disposal of the patient, the more we have to be careful about creating any panic among the patients. Furthermore, similar to the concept of an alert fatigue in the case of a CDSS, my concern would also be about sending excessive alerts to the patient.
Finally, I would raise the concern about contacting the healthcare provider as well as the patient for different types of alerts. For example, minor alerts may be sent to the patient for reminder, while more serious alerts could be sent to the patient as well as the provider. This is similar to the concept of classifying alerts and sending them based on the alerts classification system.

Emily also mentioned the concerns of clinicians, who expressed their concerns about the work overload and their inability to check or overlook “urgent alerts”. This also echoes the concern about too many alerts being generated, and acts as an additional reason why an alert rating system should be used for the alerts feature. In addition, my experience in the Ontario healthcare system tells me that there may be issues with the reimbursement of consultation of the patient with their healthcare providers. I believe that health insurance requires patients and healthcare providers to be physically present at a given location for it to be considered as applicable for insurance reimbursement. As a result, the system’s capabilities to extend remote consultation services to the patients may face this certain challenge.

My personal vibe about RPM systems is that, the benefits outweighs the limitations and that it should be brought into mainstream use. However, there may be healthcare policies and laws that may impede such use. I believe that extensive evaluations must be performed to ensure that such devices can make it to the hands of the patients, and make the Canadian healthcare system much safer.

Some final thoughts:

• What about the security measures taken to ensure that the data transmitted by the phone is secure? What if the mobile device that is being registered with the monitoring system is lost by the patient? What if the patient loans out his/her mobile to a family or friend?

• How adaptable and user friendly are devices like these for non tech-savvies? This is not to question the usability testing of the system, but to raise the concern that users who are not well trained in using the system may inadvertedly cause errors in their health data.

Bikmas 2.0

A Biomedical Knowledge Management Antenna System
September 18, 2009 (auditorium)
1:30 to 3:00

Speakers:
Laura Slamanca
lsalamanca@isciii.es

Laura Slamanca provided a presentation today on Bikmas, a knowledge management antenna system used by her organization to share individual knowledge. Due to the need to organize research activity to share data, Bikmas was developed to allow storage of data with themes using various filters. The portal includes discussion forums, wikis, as well as a personal area for calendars and websites.

Bikmas was developed using open source tools (Liferay as portal manager, Glassfish as application server, MySQL as DBMS). Since its implementation in January 2009, the system now maps 92 news sources received from blogs, lifeshares, nanoletters. It also allows users to save documents with key words. Users can share documents with the research unit once their managers have approved it.

Bikmas is an example of how open source tools can be used to develop a knowledge management solution in an organization. Given the potential value to connect with other knowledge management systems, I wonder whether future Bikmas like systems can readily integrate with other Bikmas. With an open source platform, the possibility may be more approachable.

Her abstract is available at the Medicine 2.0 website.

Orphandata.org

Enabling Transdisciplinary Scientific Collaboration using Web 2.0
Speaker Kei Cheung

Kei Cheung presented today his pilot application called Orphadata.org. Orphan data is defined as data that is no longer connected to other data, delinquent data. While the data is no longer being used, it’s “information that just can not be deleted”.

Some of the data may have been orphaned due to lack of funding or conflicting data.

Kei provided examples of profile based connections based on different user profiles (BioCrowd, PH lab, BioMedExperts, ResearchGATE), patient-oriented connections (such as PatientsLikeMe) and general knowledge sharing with wiki like environments (Knol).

By identifying the potential value of this information source, Orphandata provides the ability for others to connect to data where the others would not otherwise know about its existence.

I feel that Orphandata demonstrates the enormous potential of web 2.0 to utilize unused data, connect researchers to build knowledge at a faster pace.

ScanGrants

Reaching Out to Researchers in the Health Sciences
MaRS – Auditorium
September 18, 2009 (1:30 to 3:00)

Speakers: Hope Leman

Hope Leman’s presented today her web based tool called ScanGrants. ScanGrants provides users a listing of grant, scholarship and other funding types in the health sciences. While it was initially developed for her own organization, it is now available on the web to any researcher, free of charge, to find sources of research funding.

Hope distinguishes ScanGrants from grants.gov in that her tools can better help users sort through research grants that may be specifically relevant to their research area.

ScanGrants (www.scangrants.com) enhance users experience by allow the ability to browse latest listings on the homepage, subscribe by RSS (note: need to make changes when Goggle changed code after acquiring RSS), search by categories (classification, occupation, amount of funding), ability to subscribe by email, general feed.

Marketing of her service was done via promoting use to other librarians and hospital administrators, writing scholarly articles to promote site, connecting with prominent bloggers (david rothman), other search engines (AltSearchEngines).

Hope assessed evidence for ScanGrants' using Goggle analytics (12,000 hits per month, explore who is using service).

ScanGrant levels the playing field for marginalized users (smaller institutions, less well funded organizations, hospitals without limited library services) who may not have access to expensive grant search tools, to help them sort through relevant research funding opportunities.

My thoughts on ScanGrant: It is a wonderful example of how the development of an open source tool has the potential level to help any researcher with internet access to better locate funding opportunities. Possible next steps.. not sure if there are opportunities for ScanGrant to moves to open access collaboration (wiki like platform) to engage users to enrich the data source by adding possible sources of alternative funding.

Thank you Hope.

"Readability of the Top 50 Prescribed Drugs in Wikipedia"

"Readability of the Top 50 Prescribed Drugs in Wikipedia"

(View Abstract)

The presenter was Devin Pelcher form Nova Southeastern University, Ormond Beach, United States. David's presentation was regarding a research project on Wikipedia health-related information.

He provided a background on the use of Internet in America for finding health related information. The average reading level Americans that seek information on the web is a collage education. While the average reading level of most Americans is between 6th to 9th grade. Wikipedia tends to be one of the most popular sources of finding health information based on search ranking. Since the Wikipedia is most referenced by Google search engine, therefore, it comes up and used frequently by Internet users.

He explained the objective of the study as the systemactic evaluation of the readability of Wikipedia’s drug information content for commonly used drugs using a novel measurement tol and the Flesch-Kincaid Grad Level.

Devin explained that a sample of 50 most prescribed drug in United State were selected and the content related to those prescribed drugs in Wikipedia were indentified and saved as HTML files for evaluation.
Each Wikipedia entry was analyzed independently by two investigators using Flesch-Kincaid Grade Level. A Health information readability analyzer was also used to integrate dimensions that other readability tools lacked such as : lexical, the most easy to read; semantic, the most difficult to read; cohesion and syntactic. Eventually, descriptive statistics was used to analyze the scores generated by these tools. Some of the limitations of the study were only English version was tested and the sample of 50 may not have been a good representation of all drugs within Wikipedia

Devin concluded by stating that the reading level of the 50 prescribed drug entries in Wikipedia are higher that the reading level of consumers. Therefore, there is a potential barrier of health and drug information for some Wikipedia users. To improve the Wikipedia, the vocabulary can be simplified; and in order to improve the consumers’ comprehension, the lexical and syntactic constructs need to be enhanced without compromising cohesion and structure.

From Experience to Evidence

Patients Informing Practice: Post-Marketing Drug Data in PatientsLikeMe, an Patient-Centered Online Community

Speaker: Jeana Frost

This paper won the JMIR award for Medicine 2.0. It exemplifies openness, collaboration, participation, social networking and change; the key attributes of the Medicine 2.0 conference.

Social media can inform the use of pharmaceuticals in the marketplace. There are multiple utilizations for many drugs prescribed. 21% of drugs are prescribed off-label, but 73% of those cases are not informed by evidence. This is mainly due to physicians performing their own "experiments" with their patients. Patients may be doing the same thing with their own drug regimens. However, there remains a gap for sound, research data as many of these experiences are anecdotal. The patientslikeme website uses validated surveys to collect information. Patients enter structured information in a variety of ways. The company then creates a very synthesized record for each patient. They also allow for sharing with the correct people, i.e., researchers, who can evaluate that patient's specific experience. Providers can use the information to inform their treatment as well. Patients can search other profiles to determine other users who are using the same drugs as themselves. There are visible interpretations, i.e., pie charts, of the efficacy and side effects, as well as a forum for more anecdotal evidence.

Amitriptyline is a commonly off-label prescribed drugs. There is only one FDA approved usage for this drug, which is depression. An analysis was performed on the data for this drug on the website looking for reason prescribed, side effects, burden, etc. It was found that depression was the fourth most common problem it was prescribed for. Preceding it are pain, insomnia and excess saliva. The excess saliva finding was discovered in the ALS community on the patientslikeme website.

An example of how patientslike me can help is in the case of clinical trials. In clinical trials, there were very little sexual side effects of antidepressant drugs. However, in these communities, people are volunteering information about the side effects of these drugs. There are also data on rare diseases. Personalized medicine (2.0?) is becoming a fast-growing trend. Patientslikeme can gather the experiences of individuals to create unprecendented trials! Diseases such as primary lateral sclerosis (PLS) are now beginning to show trending data.

The reaction from the pharmaceutical industry and randomized control trials (RCT) groups to this research is mixed. In meetings with pharma companies, some executives embrace and some reject this research. This work will continue to occur whether or not pharma is going to take advantage of it. There is a shift towards more acceptance from these companies. For the RCT groups, they may not recognize this type of study as a trial. RCTs cost a lot of money, and a lot of time. This is a viable alternative!

The Motor Neuron Association have a scientific, established method to study off-label research from Twitter community. There are other aspects associated with this website, because it is a folksonomy. There is still much work to be done with diet and exercise. They are present but they are not adequately described. However, people will build tools to supplement this website and it can only grow and get better.

In conclusion, investigations can occur for existing agents for new pursposes in real time and across populations. It can inform practice and help patients. There is a group working to create a method to perform these studies in a more rigourous way. The conclusions of the study was that the website platform allows a quick and unique data source for understanding utilization and treatment experience across populations. This can be done without a clinical study or trial.

Use of the Internet for Health-related Information in Japan

Use of the Internet for Health-related Information in Japan: a Crosssectional Population-based Survey
(Veiw Abstract)

The Persenter was Yoshimitsu Takahashi, from Kyoto University, Kyoto, Japan. the presentation was about the use of the Interen for locating health-related information in Japan. Yoshimitsu stated that the number of the Internet users has increased considerably, and Internet is being used for health purposes. 88 million people have used the Internet for one year in 2007. Some statistics from other scientific studies have confirmed that 40% of American general public (2002)and 52% of Europeans (2007) use the Internet for health related information. Cellular phones are also used extensively to access the Internet, but not much known about the use of the cell phones for obtaining health information within Japanese.
Objective:
To measure the prevalence of the Internet or email use for health related information using personal computers and cell phones; and to assess the relationship between their use and user characteristics
Method: Cross sectional Survey
Setting:
September 2007, in Japan
Participants were general Japanese aged 15-79 and the characteristics under study were:
Age, gender, household income, education attainment, residency and health status.
Perceived effects of the Internet use on health care
Results:
Analysis was performed on 1200 survey respondents. Looking at the Mean (±SD)of all characteristics.
Discussion:
The prevalence in Japan was 24% which was lower than Europe and US. The effect on ability to manage their health care needs or effects on actual health care utilization were relatively small .

Limitation:
Response rate was unknown
Powerless to examine the relationship between the Internet users though cellular phones and ch
Conclusion:
The general public use cellular phones (6.4%) less than personal computers (23.8%) to obtain health related information through the Internet. Regarding user characteristics, older age, low educating and income could be some of the barrier in using the Internet for health related information.

Twitt-ER: Using Twitter in the ER

Abstract

Speaker: Christophe Laurent

The team at Onze Lieve Vrouw Hospital in Belgium has made strides in improving the clinical flow and processes in their ER by incorporating the use of twitter as a novel channel. It was interesting to see that new social media technologies can be embraced seamlessly into critical system environments. They use twitter in the same way as other users but shrink the community down to just the ER. The idea is to create awareness of flow and process in emergency services. Managing and running an ER involves lots of processes inside the ER and outside, twitter makes it possible to streamline communication. It communicates assignments for dispatch, triage, doctors, and nurses. It allows one to become aware of other people and what they are doing. It can inform you of alerts, new patients in waiting room, patient overview and status, and new lab results. The instant delivery of information to the appropriate users has enabled patients and staff to be better informed and aware of what is going on in the ER.

The department uses closed group twitter accounts. No patient names are included in the tweet, just ids to maintain privacy. Accounts have access to filters to sort tweets applicable to them to reduce unnecessary chatter or information. There is no need for expensive hardware - simply create the twitter group and filters.

This case study has presented a novel way to communicate with twitter in a critical care setting and one that is as chaotic as the ER. Despite the diverse processes and at times hectic nature of the ER, twitter was shown that it can smoothen clinical workflows and improve efficiency by enabling access to augmented reality in the palm of your hand.

What Are Young Adults Saying About Mental Health?

"What Are Young Adults Saying About Mental Health? a Qualitative Analysis of Internet Blogs"

(Veiw Abstract)

The speaker was Madalyn Marcus, PHD student form York University, Toronto, Canada.
Madalyn provided a summary of their qualitative research on analysing Internet blogs. The study looked at online blogs by young adults. Madalyn explained that mental problems are highly prevalent among young adults and often have their onset in early adulthood. She stated the objective of the study as to understand the experiences of 8 young adults aged between 18-25 who suffered from mental conditions such as anxiety disorder and mood by analysing their blogs using qualitative study.
To facilitate help seeking, she stated that the important goal is to speak with the young adults and finding ways support and help-seeking. The online seeking help allow the Young adults to seek help if they are not comfortable talking to anyone.

Madalyn explained about the method used in their study. The sample used in this study was 8 young adults aged 18-25. The majorigy were female. The methodology was ground theory to develop a theory about the experience of the young adult people with mental illness. An enhanced search was conducted on the Internet to extract all available blogs of 8 young adults who were suffering from mood problems and anxiety disorders. Meaning units were developed Two main categories were found: Powerlessness about the illness Cannot do anything about this problem Feeling isolated and alone. The young adults reported sense powerlessness and lack of control over their mental health problems, which resulted in feeling guilty and having sense of self-blame. The second theme that emerged was sense of isolations and alienation from their communities, families, and health professionals. They felt under treated and ignored by the system and demonstrated strong mixed feelings regarding medical treatments. But, they showed that blogging gave them a sense of support and connection with others. some of the charactristics of the sample were majority were female,
What are young adults saying ? What was found was sense of disconnection,lack of support and failer to seek help.

One of the limitation of the study mentioned was generlizabilty to other populations.

Madalyn concluded by stating that three is a need for community of practice approach to decrease sense of disconnection; provide a type of support other than medical environment; and to capitalize on peer support.

“Computer based Interventions for Sexual Health: a Systematic Review”

“Computer based Interventions for Sexual Health: a Systematic Review”
(view Abstract)

The presenter was Julia V Bailey from University College London, London, United Kingdom

Julia provided an interesting talk about the effectiveness of interactive computer-based interventions for sexual health promotion. She stated that sexual health is a major public health problem, and face to face intervention does not always lead to success. Internet offers a different approach to this problem by delivering of sexual health intervention that bring convenience and can be individualized and tailored to the consumer. Julia mentioned the objective of the study as to determine the effectiveness of interactive computer-based interventions for sexual health promotion by conducting a systematic review.
The method used was systematic search of electronic bibliographic database, gray literature, list of references from published studies. The search resulted in identifying 15 studies of Computer based intervention in various settings and different population groups. The interventions were mostly on the prevention of sexually transmitted infections such as HIV; and unwanted pregnancies.
Meta-analyses were used to combine the results of the selected studies. Meta-analyses showed a moderate effect on sexual health knowledge; a small effect on self-efficacy; a small effect on safer-sex intentions; and no significant effect on sexual behavior measured as a dichotomous outcome. Julia concluded by articulating that Interactive computer-based interventions for sexual health promotion are promising; they are effective tools to be used in various settings and with a variety of population for learning about sexual health. Studies could also include a wider definition of sexual health a holistic model that would include emotional, mental and social well-being with respect to sexuality.

Analysis of Websites Offering Direct-to-Consumer Genetic Tests: The Possible Implication on Public eHealth

Speaker: Loredana Covolo
Abstract here

Back in 2002, about 36% of a sample of 2500 considered using home genetic tests to find out about their genetic makeup. We can only assume that the number has grown since then, especially with the attention that companies like 23andme, founded by Anne Wojcicki, the wife of Google co-founder Sergey Brin, have received. An increasing number of us want to find out more about our genetic makeup hoping to get a glimpse of what our future health will be like. As a result, there has been an increase in the number of websites that offer home genetic tests directly to consumers.

Of the genetic tests offered online, the most popular ones are tests for cardiovascular disease, cancer, and overall personal genomic profiles. But are consumers aware that these tests are meant to analyze one's susceptibility to a disease and not designed for diagnosing it? According to the study by Loredana Covolo--the speaker at this talk--of the 31 websites offering direct-to-consumer genetic tests, only 18 of them declared the purposes for testing on their site (i.e. susceptibility testing and not diagnostic). Consumers may also be unaware of the risks associated with genetic testing such as emotional effects, false reassurances, marginalization in society based on susceptibility to a disease, as well as legal and financial implications associated with all this. Loredana's study shows that only 26% of the websites studied make these risks public.

Another interesting result of the study is that 16% of the websites encourage consumers to buy a second test. Currently there seem to be no regulations in place limiting how these tests are marketed online and whether or not these regulations extend to other services that may be marketed on the website. The study also claims that the need to know your genetic makeup could lead to the overconsumption of health care services in general. It can cost unnecessary worry on the part of the consumer and change the patient-physician relationship. It is interesting to note that only one out of the 31 websites in the study contained the HONcode logo on it.

Web 2.0 at Work: Building Health Hospital Policy

Abstract

Speaker Niraj Mistry

It is evident that a lot of patients are using social media as tools to access health information. 60% of e-patients access social media related to health. However, only a small percentage of hospitals allow access and use of social media sites. Only 351 of 5708 US hospitals are currently engaged in social media despite a significant growth in the use of social networking services such as twitter. Some reasons reported of not using social networking include not knowing enough about the technology and reduced employee productivity. A lot of hospitals do not allow access to facebook which stems from their internet acceptable use policy which may not have been updated recently. We now live in an age where social networking is a large part of life especially for the younger generation and employees.


The researchers looked at the patterns of social media use of 24 hospital employees at SickKids. The employees represented a cross section of departments and roles within the hospital. They discovered that social media was being used by staff for shift management and research on current best practices. The staff had recognized a lack of onsite connectivity for patients and families which would be very supportive for them during this time to maintain connections with their friends and family. There were also staff concerns that families were resorting to using harmful online support groups due to a lack of safe hospital supported online communities. Patients were finding ways to do self harm or fool staff. In addition, some parents were sharing misinformation regarding diagnoses and recommendations. There is a need to determine how to deal with private online groups such as facebook where people may unknowingly share incorrect information. With regards to hospital employees, there was the concern about the use of social media while on shift and reducing productivity, email overload, and a lack of virtual collaboration between staff. Many staff also had difficulty setting boundaries between their professional life and personal life in their online profiles. What is needed is to develop social media policies which incorporate the innovation, excellence and collaboration of social media. Principles such as respecting your own, colleagues, and patients' privacy and confidentiality are essential in developing a safe policy to enhance clinical productivity while protecting the organization, employees, and patients.

E-Patients and Chronic Ilnesses

"E-Patients and Chronic Illness:Commonalities and Differences among Breast Cancer, Multiple Sclerosis and Marfan Syndrome Health E-Community Members"

(Veiw Abstract)

Persenters of this session were Judith, E-patient and Adria Feder from Brodeur Partners, New York, United States

Andrea, articulated that many studies have been done on cancer and other common chronic diseases related online health information and support-seeking but not on other types of chronic conditions.
Andria stated the objective of the study as to describe the development of Health 2.0 resources for various Internet users who suffer from chronic health problems by better understanding their needs with respect to current e-health information and support seeking behaviors. The aims were to understand e-health information and support seeking behavior among diverse types of chronic disease patients. 2. Assess patients’ preferences for Web 2.0 resources and 3.Inform design of future websites support communities
The method used for the study was an interactive web survey that was launched in May 2009 to understand and explore how people with various chronic illnesses differ in their experiences in four areas: looking for treatment-related information; looking for information from experts; searching of additional resources; and seeking meaningful social support.
List owners of three e-health communities allowed posting invitations to their members that included links to the study website. Recruitment process targeted approximately 12 e-health communities: 62 breast cancer, Multiple sclerosis n=31 and Marfan syndrome n=35 Convenience sample tapped a wide range of chronic illness experiences. Andria stated that people with chronic conditions were less likely to use Internet to search for health information but when they did, they found it very useful. She stated that it is important to understand an to find what design work with patients that help them use internet for their health info is a key issue.
Andrea articulated the results of the study as : searching for different types of online health information and recourses n=127 Search for treatment or treatment side effects 90% found but 10% had a hard time to find. Scientific articles in online journals 90 % found but 10% had a hard to find. News articles 69% found as oppose to 31% who had hard to find.
Percentages were also given for the products and services and health insurances. Andria articulated some of the limitations of the study as small convenience samples, pilot survey, source biases including gender, race and education. Andria concluded that health seeking behavior was similar across divers chronic disease groups and patients demonstrated similarities in their health information and support-seeking activities. They also showed a strong desire for timely information and sharing information to help them better manage and cope with their chronic conditions.

Judith was the second speaker of this presentation she was an e-patient. She stated the the patients want : “ sites that are collecting and publicizing patient recommendations for improvement of care; and patient value: they are cleared on what they value “ I have fund the unedited , uncensored and non-stat Patient know the difference: “there is a glut of inspirational sites Patients also recognize limitations, risk of patients wisdom and e-health resources Implications for health e-community designs: Information sharing opportunities with true patient peers Searchable personal profiles Percent of functionality of member like me Integration of social network Improved access to current research findings Public access to peer-reviewed studies Judith concluded her talk by stating the importance of finding out what patients need and how to improve the information for them

Facebook: Awareness-raising, Fundraising and Support for People

Facebook: Awareness-raising, Fundraising and Support for People Affected by Breast Cancer

(view Abstract)

The presenter was Jacqueline L. Bender, PHD Student from Centre for Global eHealth Innovation, University of Toronto and University Health Network, Toronto, Canada.

The study explored breast cancer patients and survivors seeking online support using facebook. In other words, could facebook be a health resource?
Jacqueline provided a background by stating that extensive supportive care needs for breast cancer patients and survivors. Women with such conditions can benefit from the information provided by other survivors. Women normally use the Internet to cultivate relationships. She argued that the survivors appreciated practical and experiential information from other survivors. They often use the Interent to seek support to confirm and validate their questions and concerns. Sites such as Facebook that is a form of social networking provides the opportunity for cancer patients and survivors to go online and connect with their peers who are in a similar circumstances. Facebook normally is used among people to share photos, organize groups, and participate in applications The advantage of such networking sites is that they structured around people. Most online social network sites are also used to maintain pre-existing relationships, as well as to form groups with strangers with similar interests. The stated objective was to examine the role of Facebook as a source support for people affected by breast cancer and to characterize the use and function of breast cancer groups on Facebook. The method used for the study was to conduct a search on Facebook and keywords such as ‘breast cancer’ was used. The analysis was only on breast cancer ‘groups’; thus, webpages such as pages for individual member profiles, organizations, events and applications were excluded and all eligible group pages were cached for offline analysis. The information on the name, administrator and purpose of the group, as well as the number of members, posts, photos and videos were extracted. The description of group, as well as the discussion and wall posts were assessed using content analysis to determine the function of each group.

Jacqueline summarized the result. in A total, 638 breast cancer groups were identified. 45% raised funds to support breast cancer research; 36% raised awareness about breast cancer; 10% supported an external breast cancer website for fundraising, awareness or political purposes and 7% provided support to people affected by breast cancer. The statistical analysis for each group is was in process.
Jacqueline concluded by stating that most online breast cancer communities are used primarily by breast cancer patients and survivors to exchange information and emotional support. However, the majority of breast cancer groups on Facebook were created for fundraising and awareness purposes and Facebook did not appear to be used primarily for supportive care purposes.

The Information Assessment Method can help Information Providers to Integrate Health Professionals’ Constructive Feedback into the Management of Elect

MaRS Centre, 101 College Street, Toronto, Canada
Room: CR2
Date: 2009-09-18 01:30 PM – 03:00 PM

Pierre’s focus was on the information cycle and information management of electronic knowledge resources and involved a participatory research, working with the organization.

It was identified that no study was has been conducted on the integration of health professionals’ feedback for managing electronic knowledge resources, when feedback is collected with a validated method. The objective of this 20-week study was to explore whether feedback obtained from health professionals using the IAM could be integrated into the management of e-therapeutics based on the conceptual framework of ‘push’ and ‘pull’ phenomena. In terms of education, the question asked during the research was “What can be the brief individual e-learning activity?” - The method was to operationalize the framework and show health benefits mostly based on mixed method studies. Analyses were made using qualitative data analysis and descriptive statistics.

Discussion and limitation of the study were as follows:
- Health professionals feedback: Stimulated by Information Assessment Method (IAM) in PUSH and PULL contexts.
- Constructive feedback: Leading Canadian Pharmacists Association (CPhA) editors to improve the content of e-Therapeutics.

Strengths and weaknesses:
- Health Professionals feedback to information provider stimulated by a validated systematic method (brief individual e-learning activity).
- Participatory approach
- Exploratory mixed methods single case study (integration at the data collection and interpretation stages- monthly report)
- Low reading/rating rate: not an issue from a qualitative perspective (what Pierre referred to as “tip of the iceberg”) vs, biased web-based survey. There was almost no incentive (only contests and small prizes), reading rate was 6.8% and rating rate was 20.6%.

By and large, it was a two way knowledge exchange between the information provider and the front end primary care knowledge user. The study indicates that integration of constructive feedback, which could be interpreted as a lighthouse on the tip of the iceberg, into information management of e-knowledge resources may renew organizational routines. In keeping with the Canadian Institute of Health Research- CIHR's knowledge-to-action (KTA) framework; it was a two-way knowledge exchange that was well-received by the editors despite workload increase. With regards to organizational routine versus innovation, the study suggests editorial processes adapted to IAM with integration of IAM-related user feedback and renewal of information management. The future research is likely to be conducted with family physicians and patients providing yet another perspective on information assessment for e-knowledge resources.

Mobile Devices for Nursing: a Comparative Human Factors Evaluation

MaRS Centre, 101 College Street, Toronto, Canada

Room: CR2

Date: 2009-09-18 01:30 PM – 03:00 PM

This presentation focused on the features of mobile devices and how it is made more usable for the nurses. Nurses spend most of their times in patient rooms, frequently interrupted and often multitasking. Therefore in response to the needs for nursing needs and MoH initiative the MOHLTC PDA initiative was implemented.

As part of the roll-out, web-based nursing application services were introduced. Also a list of best practice guidelines was provided by the Registered Nurses Association of Ontario (RNAO) for nurses to use at the bedside. It allowed nurses to receive email alerts based on the clinical area of interest with the option to post comments as well as share information with their other colleagues.

In this comparative human factors evaluation of the most current technology, Nokia's N810 appeared to be the largest of the devices at 223 grams while Apple's iPhone 3G was the lightest of all, and Blackberry Bold was at 136 grams. Out of the five devices being evaluated, three were actually smartphones whereas the other two were Personal Digital Assistant (PDA) platformsg.

The human factors evaluation methods involved: heuristic evaluations, shadowing nurses as they performed their routine tasks which in fact revealed that the weight of the devices was extremely important since the nurses’ pockets were full and scrubs were falling down due to the heavy weight. Another interesting finding was that the nurses wanted to communicate with each other(eg. with another nurse two floors up). Questionnaires and usability testing (an observation research technique in order to assess appropriateness and ease of use) were also used as part of the evaluation.

Nurses were essentially asked to perform four tasks and results were compared for each phone-
1. Email task to see how easy it was to use each of the devices
2. BMI calculation and entering daa unto the form
3. Medline plus query through a bookmark
4. Complete a query on Wikipedia

Interesting video clips revealed contrasting scenarios with different devices such as one in which the nurse was easily using the device and another where the nurse was frustrated typing using the touch-screen! A graphical representation of the time taken to complete a task with each device is shown in the image above. As a threshold for the study, if a nurse was unable to complete the task within five minutes it was considered a failed task.

In particular for task 3, testing also revealed that nurses would perform the same task but end up with completely different results! Sometimes it would take 1min and 30 seconds for a single page to load which affects the performance time and is certainly something to be considered when designing solutions for ease of navigation.

Some other examples showed how the same task performed on different devices. Task completion times were also rated for the different devices Nokia, Blackberry, HP iPAQ etc. and it was found that task completion did not correlate well with user preferences. Results varied also due to the unfamiliarity of users with the devices.

Ratings were based on the following qualities:
Size and weight
Tactile keyboard
Advanced rendering
Quick data access
Large screen

Blackberry Bold and Apple's iPhone 3G satisfied most requirements in terms of rendering capabilities, size and weight, tactile keyboards, large screen and responsiveness.

This study has revealed some interesting facts. However, it would be interesting to look at further research on heuristics from across the province since this particular study invovled 24 nurses from one particular unit of a single hospital. Additional insight can be obtained from diverse work settings depending on the demographics of the nursing staff facing different workflow issues and challenges that can eventually help develop more comprehensive devices.

Solas - a Virtual Community for Children with Cancer

“Solas - a Virtual Community for Children with Cancer”
(view Abstract)
The speaker was Paula Hicks, Professor from Trinity College, Dublin, Ierland.

The presentation and talk was about a research study (pilot project) conducted on virtual community called Solas for children age between 3-17 years old with bone marrow cancer who faced social, emotional and physical challenges that brought about isolation and social inactions problem for them.

Background:
10-15% have chronic illness and children with chronic condition can experienced more anxiety than normative samples.
The objective of the study was:
1. Improve communication – to provide these children with a richer means of interaction and communication with the outside world to be able to communicate with family members, school and each other.
2. To enhance a sense of presence and connectedness, and improve socialization with peers, family members and their physicians.
3- to create and environment for them to practice their creativity by providing them with activity tools
More talk over the objective of the project was provider at towards the end of the presentation.
· To reduce the sense of loneness and boredom, and promote the sense of socialization
· To Create save and share artwork
· Contact with friends and family

Research Approach:
Looked at 4 key areas:
Needs Assessment- brain storming, let by a steering committee
Children’s research center –interview with parents/children and focus group meetings

System Design - The Solas connects web technologies and it is accessible via web brwoser .
Solas components facilitate two key areas, communication (video link, sms texting, live chat and email) and a variety of tools for creativity.

Results: Children enjoyed the use of Solas and it was appreciated
System design: Rapid prototyping and testing, Targeting diverse group / interface Design based on age, skills and level of wellness.
The aims of the project:
Aim1-reduce the sense of loneliness:
90 %contacted with family and friends
45% felt in had helped make contact with other young people which were also staying in the hospital
Aim2: reduce levels of boredom
90% reduces their boredom
Aim3: educational objectives:
70% not helped at all
30% somewhat
Sense of connection and means of communication
75% felt that their child had benefit from Solas
Data was collected via questionnaires
Solas 2.0 launched April 2009
Implementation was in March 2007
Needs Assessment:
· No on solutions would suit all unit to every individuals
· Social aspects-raised many issues including loosing friends resulting in high levels of loneliness and bordom
· Adherence to strict infection control policies used

Two key elements was taken into account
Audio books was one of interesting that came from the kids
They can create their own music.
Using lots of websites, the approved ones.
Solas Design Innovative uses of multimedia

Security: Influenced all aspects of the development
Registration and password pretected access
Virtual private nework set up on the ward
Site kiosk software wthich give access to approved websites

Solas-Implementation:
Solas Facilitator-registes new users, updates and maintains equipment
Avalave on 20 bead wards
Evaluation:
Let by DR. Ingram Wright and Dr Nicola Gunwhy/ Clinical Psychologists
Both qualitative and quantitative evaluations
Currently available on the Children’s Cancer Unit at Lady’s Children’s Hospital in Dublin and have about 180 users.
Recommendation:
Foucs on development the Solas membership increasing the opportunity for children and yong people to share experiences

Conclusions: Web-based communities can offer and provide an effective way for supporting these children.

Designing a User-Centric Remote Patient Monitoring System to Facilitate Heart Failure Self-Care

MaRS Centre, 101 College Street, Toronto, Canada
Room: CR2
Date: 2009-09-18 01:30 PM – 03:00 PM

Given the increasing number of chronic diseases the focus on self-care becomes crucial and this session seemed to address the issue with great precision. It was quite a unique presentation focusing on user-friendly remote patient monitoring (RPM) systems for health failure self-care. Emily provided a brief background on the implications of heart failure when the heart cannot pump enough blood through the body which causes numerous complications for the patient, thus emphasizing the need for patients to adhere to certain regimes in order to maintain quality life. It was mentioned that one in five are heart patients and with approximately 500,000 in Canada.

Due to low self-efficacy of patients in performing self-care practices, patients get readmitted to the hospital over and over again thereby occupying beds, causing huge wait times for emerge patients and ultimately adding costs to the healthcare system. Monitoring patient conditions remotely by using IT interventions, medications can be adjusted just right for each individual patient. They need to make certain lifestyle changes after the episode of heart failure such follow fluid restrictions, seek help when needed, maintained weight and so on, however patients don’t normally adhere to these basic measures. According to some research, one-third of hospitalizations can be prevented should patients follow the needful and be monitored regularly by the physicians, for which, the clinicians need to detect signs early and therefore- RPM!

Emily’s research involved 11 heart failure patients, 4 physicians and 3 clinical fellows; the perspectives of patients and physicians were really noteworthy. In addition to patients not following the regimes, patient not knowing when to seek help was something I found quite alarming. On the other hand, the clinician needs to know how the patients are doing on a daily basis and be able to conveniently access information on patient status. As part of the experiment, patients were given a home kit containing a Blackberry Pearl, Bluetooth-enabled weighing scale that would transmit results wireless to a secured system. Alerts systems were also built into the blackberry and patients would get reminder should they miss an activity. Further, patients can login to a secure website to look at their trends and not log weights etc in a paper-chart. At the clinician’s end, they would be able to get patient info through a secure website and adjust thresholds and parameters for diff patients. Moreover, they also have the option to receive email alerts sent to their blackberry.

Some of the challenges faced in developing the rule set for this intervention were discussed- complex decision-making as clinicians have different perspectives for the rules and preferences. Clinicians wanted multiple parameters to be put under the rule set which may possibly make the system more complicated. The researchers therefore attempted to strike a balance between flexibility and simplicity. Through iterative usability testing and feedback from clinicians and patients themselves, improvements were made to this system.

A key learning from this talk was understanding the stakeholder’s concerns and reflecting upon ways to address them in designing innovative solutions. For example, one major concern raised by the clinicians was the fact that they do not have enough time to follow-up on each individual alerts. Other concerns pertained individualization of patient conditions, legal liability and the need to document the actions. On the part of patients, concerns included false alerts sent by the devices overwhelming clinicians unnecessarily.

The study basically tried to integrate patients and physician’s feedback. It was important to engage both parties while designing systems and incorporating iterative feedback was a key to the success of this innovative RPM system for HF self-care. It was indeed an impressive approach and being an attendee I look forward to the results of the first randomized controlled trial (RCT) and its impact on self management of care for the recruited patients.

Some of the audience questions related to the age group of the patient participants and whether or not their family care-givers were involved during the pilot. In response, the age group varied from early 20s to the other end of the spectrum, and caregivers were also trained and formed part of the pilot study. Concerns regarding REB approval for such intervention studies were raised, however, this being a non-invasive experiment, the research team did not face much hurdle. With the rise in number of chronic disease patients in this century, we are seeing more patients and caregivers eager to use e-tools to manage their illness and I am excited to see positive results from this awe-inspiring intervention. Once on the go, it would also be interesting to see the changes in cost structures and the response of health consumers given their diverse ethnic and social backgrounds.

Hospital Adoption of Medicine 2.0

Abstract

Speaker: John Sharp

A case study of adoption of medicine 2.0 at Cleveland Clinic was presented with recommendations on how to get there. The clinic has a EMR system with CPOE implemented and quality reporting capability. The organization has the benefit of being IT savvy and being early adopter of innovations. The issue with Web 2.0 is that it is a disruptive force. Healthcare is about being risk adverse while web 2.0 is risk taking. Healthcare information is from authoritative sources while web 2.0 from social networking. Privacy and security is regulated in healthcare while there are privacy issues in social networking as anyone can create an account.

At the Cleveland Clinic, web 2.0 started with unofficial blogs on clinical cases and images as a teaching tool for residents. Unofficial wikis filled in the need for quick references. The transition to embracing more social networking aspects included a major website redesign based on consumer research. Links to a YouTube channel, facebook page, and twitter were launched on the site. The Chief of medical staff has a blog for medical staff with anonymous comments. Several departments have their own wikis. What enabled this change was that the institution encouraged innovation and that they had a champion on board in the higher levels. In addition it was also the culture at the organization that made it possible. The willingness to encourage innovation and engage patients through social media is what is needed in the culture of the organization to successfully embrace and integrate medicine 2.0.

Web & Mobile Process Support for Management of Patients with Depression: preliminary research of the improvehealth.eu RCT

Matic Meglic of UP PINT presented his preliminary findings of a RCT on improvehealth.eu, a web & mobile-based support system for patients with depression. Traditionally, most patients are lost over the course of an intervention to treat depression. On particular problematic aspect of depression management is the low compliance to drug therapy. The positive effects of antidepressants typically start after 4 weeks of administration, however the side effects kick in immediately; this produces a strong disincentive for patients to continue with the medication. They aim to improving compliance in order to improve outcomes.

Improvehealth.eu is a web & mobile-based system that provides a few key services: 1) It connects the patient with the family doctor, psychologist, psychiatrist, and care manager, 2) allows patients to self-assess and provides evaluation/feedback, 3) acts as a reminder system (i.e. sends texts if the patient forgets to take their meds), and 4) provides automated care management support.

Meglic presented some of his team’s initial RCT data on the project using 18 participants. Attrition was found to be low as after 6 weeks all patients were still using the service. This indicates that compliance is high. Due to the sample size, the majority of their statistics did not have to power to reach significance, but their results look promising. A trend in increased compliance (67% vs. 50% control), increased drug-taking consistency (83% vs. 40% control), and increased duration of drug use (80% vs. 40% control) emerged. Symptoms significantly improved for 43% of patients and patients in the intervention group had a 4x greater chance to finish depression free.

As they await the rest of the RCT results, the team is currently attempting to integrate the platform with EHR & PHR as well as making a business model to sustain the project over time. A cost-benefit study and application of the program to different chronic diseases is in the works.

Websites on Addictive Disorders

David Kavanagh of Queensland University of Technology presented a comprehensive review of Websites on Addictive Disorders using literature reviews, expert reviews of websites, and surveys of consumers, health professionals, and stakeholders. A review of the literature found that very few RCTs on addiction websites existed. In those found, data was uncontrolled and typically only college students were recruited as participants. Most studies evaluated normative assessment feedback interventions, an approach that has less effectiveness over time.

The expert review of 56 websites found that 73% were related to alcohol and most aimed to provide information; only 18% provided individual tailoring or feedback to users. 84% of all sites contained some sort of advertising. The review panel found that the sites were generally of high quality and had current content, however, they lacked in offering comprehensiveness and a balanced perspective. A few common problematic issues arose across the websites. The review panel commented that while the technical quality of the sites was high, they were not up to current web standards. Additionally, the language used was found to be of too high for the average person and sites rarely gave advice on what specific treatments worked. Most troubling in our web 2.0 world, interventions were rarely conducted online.

The consumer survey found that easy navigation, open access (no log-in), conversational language, downloadable and printable information, as well as an internal search function were important features for a successful website. They did not see the need to download extra software or play health-related games. A few features most respondents reported they would use were 1) downloadable fact sheets, 2) getting advice , 3) online tests with feedback.

Currently, Kavanagh and his team are trying to implement their findings in a new web portal called “On Track”. This portal takes a “guidebook” approach rather than a “program-based” one in order to allow users the flexibility to access the tools they want and take control of their progress. Motivational interviewing with feature heavily on the site as will graphics over text.

We Will All Be Patients Someday - Instigating Health Care Transformation One Community at a Time through HealthCamps

Friday, 09:00 am – 10:30 pm

Speaker: Mark Scrimshire
Abstract

Mark Scrimshire spoke about Healthcamp, with a Healthcamp being run this week on Wednesday in Toronto.

Healthcamp was described as being about bringing people together, inlcuding patients, in order to foster the concept of participatory health care. The question posed is: How can we rebuild health care on a participatory model using social media, open standards, etc.?

Advice was given on how to put on a healthcamp that includes engaging your community, leveraging social media by using a digital footprint before, during, after the event, consider how money is spent on extras, provide food, and consider your location.

One key feature of healthcamp is that there is no prescribed schedule as participants dictate the program, and if a participant wants a topic to be covered, they only need to speak up. The event is more than a conversation in that it tries to rethink relationships that will ultimately create actions.

The question and answer session generated a question about what happens after healthcamp in regards to putting ideas into action. Mark described that the sessions include planning of next steps, and that healthcamp is where you can form an idea that is one part of a bigger picture.

John Sharp, the chair of the session described healthcamp as a day of hallway conversations. This is an intriguing thought as Tipping and colleagues (JCEHP, Volume 21, p.90) [ fulltext ] have published a paper on the value of unstructured breaks during formal CME (continuing medical education) sessions suggesting that these "hallway conversations" are potentially as important as the structured learning sessions. They were described as helping to integrate new material, solve individual problems, and make new meanings out of their experiences.

Research Issues of User-generated Medical Education Content

Research Issues of User-generated Medical Education Content

Panagiotis D. Bamadis, Aristotle University of Thessaloniki, Medical School Lab of Informatics, Thessaloniki, Greece.

Sept 18, 9:00AM - 10:30AM MaRS CR2 (Research)

With the plethora of user-generated medical education out on the internet mEducator was born, a new project focusing on best practices. The scope of the system is to enable state of the art medical educational content using technology. Content is generated from textbooks, teaching file, algorithms, virtual patients, and more. In essence, they want to be a metadata scheme for the description of all types of medical education content with reference to relevant standards

I liked the idea and theory backing up the project. However, when asked about international copyright policies, there may be a snag. Simply put, the question must be asked regarding who owns the information and material. If professors from Stanford and Harvard post lecture materials online, then will mEducator reap the financial benefits of their work, or will the professors be compensated? It should be noted that one of mEducators values is “openness”.

I feel that this project has a lot of potential, especially when collaborating with international standards bodies such as HL7 and IEEE. It will be interesting to see how mEducator develops throughout the next few years.

Apomediation and Women's Choices of Birth Place and Attendants

Speaker: Holly Witteman
Abstract here

This was a fascinating talk on a study by Holly Witteman of the University of Toronto. Holly's research looked at the role that apomediation plays on shaping a woman's choice of birth place and attendant. In other words, does the participation in online communities discussing pregnancies and plans for childbirth affect a woman's opinion about birthplace (home, hospital) and attendant (midwife, doula, doctor)?

To answer this question, content and narrative analysis on forum posts from online communities based in the US, Australia and Canada were conducted. It was found that online communities do have an influence on a woman's opinion about childbirth. Some of the recurring themes found in the results of the study are that online forums influence women to either move away from medicalized births, towards them, or have no real impact on their opinion at all.

It was fascinating to note that more and more women are moving towards unassisted childbirth as an option instead of medically assisted ones. The study shows that one reason for this is the fact that there is a growing mistrust in medical professionals among these women, and this mistrust is fortified by the personal opinions of many posted on online community forums. At the same time though, results show that some women have moved towards medicalized births after being influenced by posts on the online forums. The third group of women--those who's opinions were not influenced by online communities at all are classified as "independent thinkers" who do not want to base their decisions on the opinions of others. But they do claim that their decisions were shaped by sources beyond the online community (such as religious groups, authority figures, health care practitioners, acquaintances).

An increased awareness of options and increased empowerment for decision making are among the reasons listed by women for participating in online communities. Women in these communities are co-creating knowledge, sharing information, and collectively moving towards different attitudes about their childbirth plans.

Perfection, Micro-Thanks and Micro-Ideas

Friday, 09:00 am – 10:30 pm

Speaker: Carlos A. Rizo, Health Strategy Innovation Cell, Toronto, Canada

"Imagine if 6.8 billion people ran the world's health care system"

Carlos Rizo is interested in 'wisdom of the crowds'. Examples of organizing information where wisdom is taken from the crowds is number10.gov.uk, an e-petition used to engage citizens to improve government in the United Kingdom, and a Starbucks page called mystarbucksidea that engages customers to find out how to make their Starbucks experience better.

Carlos poses the question, how could something like mystarbucksidea be used in health care by asking patients for suggestions. Typically suggestion boxes elicit responses around problems and negative issues that people have encountered. The approach taken by Carlos is not to identify problems, but rather to have patients identify solutions. One stipulation of his project is that the ideas have to be low cost and low tech ideas so they don't have to try to compete with other groups wanting funds within the healthcare sector.

My Health Innovation allows people to submit ideas, other users can vote on it, and allows for ranking, eg. to create a list called "Top Ideas". Their tag line: share, vote, and say thanks for low-cost, low-tech health ideas.

One interesting aspect to the site is its acknowledgement of the power of gratitude and that in healthcare, thank you's or gratitude can often not be public enough. For this reason, they wanted to provide a way to say thanks and added a THANKBook that collects expressions of thanks for how an idea changed your life positively, maybe forever.

The question and answer session prompted questions around the potential for abuse and Carlos indicated that users are only allowed to vote on ideas once, and that ideas are typically low-tech, low risk. There was interest to know if there were plans for feedback to implement ideas into practice and funding has been received from the Ministry of Health.They review ideas weekly in progress reports, and this allows them to see if ideas have been implemented successfully elsewhere.

My Health Innovation is a simple and elegant idea.

Perceptions and Attitudes Toward Virtual-Reality Medical Training: The Ann Myers Medical Centre

Web 2.0-based medical education and learning

Perceptions and Attitudes Toward Virtual-Reality Medical Training: The Ann Myers Medical Centre

Fransisco J. Grajales lii, eHealth Strategy Office, University of British Columbia Faculty of Medicine, Vancouver, Canada

Sept 18, 9:00AM - 10:30AM MaRS CR2 (Practice)

Fransisco Grajaleis Lii gave a riveting presentation the Ann Meyers Medical Centre (AMMC), a virtual hospital training centre based on Second Life. The focus of the AMMC is to provide a platform capable of simulating real life medical situations. In many ways it is a state-of-the are online training facility. However, the question arises if the online simulations will be transferable to real life. Initially, I was pessimistic, but with some interesting examples my mind was slowly but surely opened to the possibilities offered by such a centre.

Firstly, one must admit that there are definitely some drawbacks to using simulated online exercises as opposed to real life exercises. For example, one observer asked about the potential of using such a simulation for emergency situations that have short timelines. Surely not all simulations will be as efficient as real life examples. However, there are loads of simulations that can be done effectively, with proper counsel, and in a very cost effective manner (perhaps this is the future of medical training?).

Fransisco gave some great examples of uses for the AMMC. For example, training physicians on various electronic medical records (EMRs), or programming the program to force handwashing into clinical workflows. He also pointed out that since the program was online, it was open to the international community. Since practices and standards vary in different countries, this has the potential of producing some very insightful dialogue. Another novel application has been to set up a forum that posts the most up to date information on H1N1. Since there has been a emergence of clinical data on H1N1, this provides a valid source of evidence-based information (the information posted came from Harvard school of public health).

At the end of the day, it comes down to whether medical students or practicing physicians will actually use the application or not. As a potential medical student myself, I can definitely see the AMMC having a future in my medical education should I choose to pursue that career route. There will definitely be some barriers to use though (if anyone has ideas on this, they are recommended to tweet their ideas using the hashtag #AMMC). I think that medical students will need some persuasion. If adoption of ehealth technologies in general is difficult in the medical community, how will this be any different? I am not fully convinced on the user-friendliness of the site as it currently is. In addition, I do not want to invest the initial time required to learn how to use Second Life. As an informatician, if I am unlikely to invest the time into such applications, how likely are medical students?

The New Zealand Health I. T. Knowledge Base

Topic: Building virtual communities and social networking applications for health professionals

Presenter: Chris Paton, University of Auckland, Auckland, New Zealand
Project: Health InnoVation Exchange "hive" - http://hive.org.nz/

The use of social tools on the web in the workplace is still not fully adopted by the decision makers in organizations. Social media such as facebook and twitter are generally blocked. The presentation by Chris on the topic of Health IT knowledge base is a very interesting one which is aimed at "the push to build knowledge communities in a collaborative manner that suit the industry". Although social websites such as facebook etc, exist and can be further leveraged to adapt to the business environment in some respect, it is my opinion that we should build websites that are customisable to the health industry; can be managed and streamlined from a professional stance that will give more creditability. Trust and confidentiality are of vital importance coupled with a sense of the need to contain activities to business environment (which can be better controlled).

In addition to this, we would want to look at how to aggregate data from other social media such as facebook and twitters to create topics of interest etc. to integrate with these "enterprise like" social media.

Chris has explained that one of the impetus for the this project is the Ministry of Health in New Zealand requirement of a system that would allow end-users/innovators and policy makers provide ideas, share information about projects and dissemination of innovation. (How to see other projects in progress and share info.. different or similar fields and form collaboration.)

Interesting websites that Chris is affiliated with as follows:-
www.newmediamedicine.com - social network for Medics
www.healthinformaticsforum.com - discussion on health informatics

Some interesting platforms suggested for developing social medias are:

• vBulletin(New Media Medicine)
• Ning
• Drupal
• Websphere
• Sharepoint

Chris further explained that Drupal open source content management platform was chosen for this project as a Web 2.0 tool to facility communication, networking and knowledge sharing in the New Zealand health sector.
Chris stated that the advantages of this were larger user-base, open source, customisable through contributed modules and good reputation in the marketplace. This was chosen over an enterprise solution as it allows for discussion with the wider world and user interface was familiar to user.

The website focused on detailed user profiles of key decision makers and project leaders linked to Wiki documents about the projects the users are involved in. Users can update their profiles, collaborate on Wiki project documents and create blog posts to inform the network about news and updates to their projects.

In addition, the site has a discussion forum and social networking capability to allow users to find colleagues with similar interests and generate new ideas and innovations within the sector.

The key point from this presentation is the concept of "Building a community." also referred to as community of practice (CoP) from a knowledge management theoretical view. But as with most of these projects, there must be plans for support and continuous use. Pitfalls to avoid are empty forums and blogs which will discourage new users. This Chris explained can be minimized through the recruiting of all stakeholders and encouraging them to use the system (blog, join groups). Interesting ideas on how to launch this but the most important points were the post launch such as welcoming new users, reply to all new post, enforce the terms of use strictly... (build standard of behaviour.. keep it friendly.. moderator if necessary)

It is my opinion that this can also be incorporated into the everyday business activities such as encouraging the circulation of notes from meetings through this forum or encouraging comments prior to meetings etc.)

Based on the questions and comments from audience, emphasis was made on the importance of the moderators of a CoP website, of which characteristics such as someone who is level headed and keep the rules.. understand the vision.. fostering and resolving issues towards getting information to focus on the objective of the CoP were suggested.

This was a rather interesting talk aimed at ... "if you build it will they come".. providing solution to sustainability in the long term which must always be forefront in planning.

For more info see abstract from Medicine 2.0 website.
Also check out the Health Informatics New Zealand Conference for the launch of this project.

Web 2.0-mediated Blended Learning: Separating Fact from Fiction

Web 2.0-based medical education and learning

Web 2.0-mediated Blended Learning: Separating Fact from Fiction

Kevin A. Clauson, Nova Southeastern University, College of Pharmacy, Palm Beach Gardens, United States

Sept 18, MaRS CR2, 9:00AM - 10:30AM (Research)

Kevin A. Clauson, a researcher at Nova Southeastern University, is investigating the potential of web 2.0 applications in medical student learning. Specifically, Clauson is attempting to bridge the knowledge gap of this issue between what we think we know and what we actually know.

In order to aid his investigation, his team has conducted a 37 item questionnaire to first year pharmacy students that attend school between three different campuses with the purpose of characterizing the knowledge, familiarity, and preferences towards web 2.0.

Some preliminary results:

· The survey had a 94% response rate

· The first or best language of respondents was 67% English, 24% Spanish, and the rest ‘Other’

· 75% of respondents read blogs, with about 10% actually authoring blogs

· Almost all respondents used wikis (with wikipedia being the most popular), with 12% actually contributing to wikis

· Only a small portion of respondents used Second Life (11.2%), many had never heard of it

· Many were unaware of microblogs; only 7% actually used them. Interestingly, males were more likely to be users of microblogs than females

· Most respondents used Facebook (83%). Myspace was still fairly popular (31%) with LinkedIn being the least popular (1.5%)

One of the limitations of this study was that it was conducted only at one university. Interestingly though, the chair of the session had conducted a similar analysis at Stanford with very similar results.

My question with this research is regarding applicability. How can this data be integrated into medical education? Having taken an online course this summer, I was not impressed with online learning platforms, and I am in a masters with a focus on informatics. One point of interest that Clauson alluded to was the notion that some web 2.0 applications are viewed as being solely for personal use, whilst others are appropriate for academia. In other words students reported that they see some applications as specifically their own (for personally life, such as Facebook) and others that are more appropriate for school (such as wikis). As a student myself, I am in agreement. I personally would not want to have a class force me to incorporate my facebook account as part of the learning process – that is for my personal life only.

It will be interesting to see how these results change over time. I am especially interested in how the emergence of smartphones is affecting student perceptions on web 2.0 learning applications. For example, are iphone users much more accepting of elearning applications?

Health Care Consumerism- Understanding the Behaviours That Will Impact Health System Design

1:30-3:00pm, Mars CR2, Med2.0 Congress Sept 17, 2009.
Presenter: Mark Fam, Deloitte, Toronto, Canada.

This was a very interesting presentation reflecting how consumerism is emerging as a trend
across Canada. The survey results show the various perspectives of healthcare consumers and the timing seems just right for healthcare providers and policymakers to make the best out of the survey implications. Deloitte’s study from 2009 involved 2300 consumers across all provinces. If not mistaken, Mark mentioned the results were within 95% confidence interval and 2% margin of error for the survey that studied behavior versus interest gaps of consumers while making healthcare decisions.
Mark’s presentation categorized 6 major domains of healthcare consumer activity-
Zone 1- Wellness and Health Management: How do we promote better healthcare, how do we empower individual. There is an interest among individuals seeking healthcare and healthcare information, but how do we get consumers to take action?
Interestingly, almost 50% of the participants had chronic disease but it still did not change their actions. The recent trends show that consumers want quick access and personalized services. There is very high interest in remote monitoring among Canadians.
They are looking for electronic tools to manage their care, as per the study.
Zone 2- Information Seeking: Consumers are not looking for comparisons of hospitals they have the trust. They just want the direct care connection. There is a high interest of family caregivers and they are open to innovative technologies.
Zone 3- Traditional Health Services: Only 62% patient satisfaction from those who recently got discharged from hospitals. Willingness to abandon their traditional physicians and adapting the devices. How to ensure that programs connect. Almost a third don’t understand the risk associated with their diseases. Numerous indicators were shown.
Personalized medicine comes with a high price tag. It does put into context in figuring out the right approach in terms of the costing models.
Zone 4- Alternative Health: How is the trend emerging? 25% are using alternative health services.
Zones 5- Health Insurance: Just how prepared people feel facing future health costs? Statistics reveal only 39% are very well-prepared. Family caregivers need technology tools.
Zone 6- Health Policy: 37% Canadians feel they have good understanding of how our health system works; and 35% are very satisfied.
In conclusion the speaker emphasized that healthcare is evolving more as a consumer market with concerns around quality starting to change. Trust in public health system is quite high. Focus on personalized service will continue to increase.
Referring to Paula Hucko’s (HASGlobal) earlier presentation on Social Healthcare Networks, perhaps we can refer to these consumers as ‘Prosumers’ as the characteristics reveal that they are actively seeking information. Nevertheless, I believe the crucial thing to be considered here is a extent of ownership these active healthcare consumers are taking for their health outcomes. At the end of the day we need to ensure that healthcare providers still play a major role in improving the health in partnerships with patient and caregiver involvement, as opposed to individuals and families using e-tools as diagnostic tools bypassing the healthcare teams completely.

Building Virtual Communities and Social Networking Applications for Health Care Policy Makers

Friday, 09:00 am – 10:30 pm

Speaker: Donald William Moore Juzwishin, JCI, Edmonton, Canada
Abstract

Donald Juzwishin described policy makers as laggards in adopting online tools and networking. At the same time research indicates that social determinants have a great impact on health, eg. employment, housing.

Donald identified what health policy makers need from web 2.0 and this includes assurance of security and confidentiality; management of risk; assurance of quality, credibility, authority; widespread acceptance in practice, education, and research; demonstrated effectiveness; demonstrated outcome and impact; and
demonstrated value.

Despite being laggards, it was outlined what web 2.0 can do for policymakers and this was identified as providing another medium of interaction with public; provide transparency and accountability on a policy agenda; encourage best practice and benchmarking in policy making; and provide opportunity for ubiquitous dynamic visualization of health, health care issues and problems.

The challenges for policymakers include to preserve and protect public interest, avoid being manipulated by interest groups, encourage equity in society.

I am currently completing a systematic review asking the question, do policy makers use systematic reviews to guide decisions? Although not technology-related, it provided the opportunity to find out that overall, there is a limited amount of literature available on policy makers in relation to health care. It would be exciting to hear that someone related to policy making is interested in the possibilities and potential of moving to the next step of implementing some of the networking tools, eg. to provide transparency and accountability on policy agenda, as described above. Does anyone have examples they can share?

You've got a Hole in your Genes

Analysis of Websites Offering Direct-to-consumer Genetic Tests: the Possible Implications on Public Health

Speaker: Loredana Covolo

Genetic tests analyze genetic material for various reasons. It could be for disease-related mutations, or to detect a person's reaction to a treatment. Many companies are offering direct genetic tests to the public through the internet. 36% of a sample of 2500 people would consider a testing service to test their own genetic material. The objective of this study was to describe these direct genetic testing websites, analyze their information and marketing techniques. Websites for health care professionals and non-health related services were excluded. The marketing strategies for 18 of 31 companies stated that the websites were not aimed at diagnosis, but rather for risk assessment. These assessments are not appropriately used by consumers because there are many multi-factorial diseases. One should also take into account environment, family history, etc. These predictions are useful when prevention measures are available. Patient empowerment, simplicity of sample collection and accreditations were most commonly observed marketing techniques.

In 16% of companies, consumers were encouraged to buy more tests. After testing, there were offers for food supplements and gene-based nutritional guidance. The collection of DNA and communication of the results were well-explained. Only one website studied sent the results to the healthcare provider. 65% of websites encouraged consumers to visit their healthcare providers if they had questions or concerns about their results. But not all physicians have had training in medical genetics. The lack of interpretation can lead to increased risk of misunderstanding of their results. Only 4 of the websites offered counseling in some form. Only 8 of the websites listed the risks of having the tests performed, i.e., psychological well-being, genetic dicrimination, etc. The future use of genetic information was not clearly stated, nor was the future use, storage and protection of this information clearly stated on may of these websites.

Genetic determinism, impact on health behaviour and over-consumption of health care services are possible results of widespread testing. It can also create a change in patient-physician relationships. Physicians are a common source of advice for counseling about test results, but it would be difficult for a patient to visit the doctor after having this test performed if the doctor was not knowledgeable. Last year, President Bush signed the Genetic Information Nondiscrimination Act (GINA). Which protects the rights of individuals who choose to have this test performed. Genomic medicine requires regulation in this field.

Paradox of Choice: How Will You Give Birth?

Apomediation and Women's Choices of Birth Place and Attendants

Speaker: Holly Witterman

Online communities are found in abundance on the Internet. Different communities may promote different values. The question then becomes, do these values affect women's decisions regarding their birth? Unassisted childbirth is on the rise. Births have been performed mainly in non-health settings throughout history. But moving into the future, (in Western countries), society has moved to a technocratic model of delivery. This is a complicated political and research field. There are calls for increased home birth, increased hospital births, and everything in between by advocacy groups. An article from the Globe and Mail and other newspapers have illuminated this issue in the recent past.

This research focused on three main concepts.

Values about place, i.e., home, hospital and birth centres. Values about attendance, i.e., doctors, midwives, nurses, etc. And doulas, which provides emotional support to the mother. They are not a medical attendant.

Research studies from British Columbia and in Ontario compared planned home births involving midwives to hospital births. They found that home births were at a similar safety level as hospital births.

Another question to analyze was: How are the forum values constructed and do the women in these forums have similar psychosocial characteristics? The threads in forums were analyzed for content. A survey tool was used to determine the psychosocial characteristics of the forum participants. Place and attendant were paired into six categories.

A recommendation for online surveys is to include an item where the participants has to explain themselves in five words. It captures some dimensions that can't be captured on the psychosocial scales. The multi-dimensional locus of control was used to analyze the data as well. There was a moderate statistically significant effect in the choice of place with exposure to powerful others, i.e., obstetrician. Health care system distrust was also measured, and as births occured further away from a healthcare setting, distrust also increased. Women who are choosing birthing options outside the statistical norm are ascribing these choices to their online communities.

Increased awareness of options led to increased empowerment for decision making. In some cases, women reported that it reinforced their internal beliefs. Some women reported that the forums were extremely influential for their birth choices. It modified the expectations of some women. It also reframed some women's perceptions of their previous births. However, women who were not influenced considered themselves independent thinkers, did not trust online posters, and viewed the posts as personal opinions. They already had pre-formed opinions.

In summary, there is evidence that these communities ARE in fact influencing these women and their decisions. Forums are not just places for discussion, but people are co-creating knowledge, collaborating, facing challenges and overcoming them together.

“Solas - a Virtual Community for Children with Cancer”

The speaker was Paula Hicks from Trinity College, Dublin, Ierland. Professor

The presentation and talk was about a research study (pilot project) conducted on virtual community called Solas for children age between 3-17 years old with bone marrow cancer who faced social, emotional and physical challenges that brought about isolation and social inactions problem for them.

Background:
10-15% have chronic illness and children with chronic condition can experienced more anxiety than normative samples.
The objective of the study was:
1. Improve communication – to provide these children with a richer means of interaction and communication with the outside world to be able to communicate with family members, school and each other.
2. To enhance a sense of presence and connectedness, and improve socialization with peers, family members and their physicians.
3- to create and environment for them to practice their creativity by providing them with activity tools
More talk over the objective of the project was provider at towards the end of the presentation.
· To reduce the sense of loneness and boredom, and promote the sense of socialization
· To Create save and share artwork
· Contact with friends and family


Research Approach:
Looked at 4 key areas:
Needs Assessment- brain storming, let by a steering committee
Children’s research center –interview with parents/children and focus group meetings

System Design - The Solas connects web technologies and it is accessible via web brwoser .
Solas components facilitate two key areas, communication (video link, sms texting, live chat and email) and a variety of tools for creativity.

Results: Children enjoyed the use of Solas and it was appreciated
System design: Rapid prototyping and testing, Targeting diverse group / interface Design based on age, skills and level of wellness.
The aims of the project:
Aim1-reduce the sense of loneliness:
90 %contacted with family and friends
45% felt in had helped make contact with other young people which were also staying in the hospital
Aim2: reduce levels of boredom
90% reduces their boredom
Aim3: educational objectives:
70% not helped at all
30% somewhat
Sense of connection and means of communication
75% felt that their child had benefit from Solas
Data was collected via questionnaires
Solas 2.0 launched April 2009
Implementation was in March 2007
Needs Assessment:
· No on solutions would suit all unit to every individuals
· Social aspects-raised many issues including loosing friends resulting in high levels of loneliness and bordom
· Adherence to strict infection control policies used

Two key elements was taken into account
Audio books was one of interesting that came from the kids
They can create their own music.
Using lots of websites, the approved ones.
Solas Design Innovative uses of multimedia

Security: Influenced all aspects of the development
Registration and password pretected access
Virtual private nework set up on the ward
Site kiosk software wthich give access to approved websites

Solas-Implementation:
Solas Facilitator-registes new users, updates and maintains equipment
Avalave on 20 bead wards
Evaluation:
Let by DR. Ingram Wright and Dr Nicola Gunwhy/ Clinical Psychologists
Both qualitative and quantitative evaluations
Currently available on the Children’s Cancer Unit at Lady’s Children’s Hospital in Dublin and have about 180 users.
Recommendation:
Foucs on development the Solas membership increasing the opportunity for children and yong people to share experiences

Conclusions: Web-based communities can offer and provide an effective way for supporting these children.

Mobile Devices for Nursing: a Comparative Human Factors Evaluation

Medicine 2.0 ’09 Congress
Session: Usability and human factors on the web
September 18, 2009 1:30 PM – 3:00 PM Room CR2

Speaker: Tara McCurdie, Centre for Global eHealth Innovation, University Health Network, Toronto, CanadaAnjum Chagpar, Centre for Global eHealth Innovation, University Health Network

Topic: Mobile Devices for Nursing: a Comparative Human Factors Evaluation
Link to Abstract: http://www.medicine20congress.com/ocs/index.php/med/med2009/paper/view/317

Working in collaboration with a team from the Centre for Global eHealth Innovation at UHN, Tara McCurdie introduced a study that focused on features of mobile devices that support decision making and make the devices usable for nurses. Ms. McCurdie pointed out that nurses are frontline in patient care and need to be very mobile. They are frequently interrupted and are multi-tasking constantly. Yet with advent of electronic health record systems, there is increasing need for them to be at a desktop. This presents an inherent conflict with their need for mobility and results in decreased time with patients.

There is potential for mobile devices to help nurses be more efficient in delivering care however adoption of mobile devices remains limited. Ms. McCurdie and her research colleagues endeavored to compare the usability of 3 commercially available smart phones for accomplishing typical nursing tasks. The analysis is intended to provide understanding into adoption barriers and enablers of mobile devices.

Usability testing and heuristic evaluations were conducted with twenty-four nurses of an Organ Transplant Unit at Toronto General Hospital. The participants were asked to identify issues with while they performed four typical nursing tasks. Tasks included creating an email and a BMI calculation. In an effort to discover what mobile phone features support browsing and access to online information resources, there were tasks to query two online databases. Additionally, user preference data was collected through interviews and questionnaires following each evaluation cycle. Shadowing was also employed so that use of mobile devices could be observed.

Results showed that while the Nokia device the most number of low severity heuristic violations, it was found to be clunky by a number of the nurses and therefore was awkward to carry around. This result was not voluntarily reported by the nurses, rather it was observed during shadowing which underlines the importance of doing shadowing in conjuction with usability testing. The weight of the Nokia made it too heavy to carry comfortable in nurses' uniform pockets, this interfering with adoption. The Blackberry, which was also the lightest device, rated most favorably in the study. This was attributed to its overall adherence to good design principles.

Persuasion Strategies of Online Pharmacies

How the web transforms patients into consumers

Speaker:
Grazia Orizio, Section of Hygiene Epidemiology and Public Health, Department of Experimental and Applied Medicine – University of Brescia , Brescia, Italy
MaRS Centre, 101 College Street, Toronto, Canada, Room CR2
September 17, 2009 (3:30 pm to 05:00 pm)

Grazia Orizio presented her research relating to "online pharmacies", exploring online websites that offer and advertise sales of prescription drugs. Her transversal study explored the characteristics of online pharmacies with an analysis of their selling strategies and how consumer trust was built.

Her sample of "on-line pharmacies" were identify using a Goggle search of websites that sold prescription drugs. Each of these websites were coded using an ad hoc Codebook based on Content Analysis method.

The following are some of her findings that I found most interesting;
1. 22% asked for a medical prescription (78% did not require it)
2. 38% displayed their physical address
3. every kind of drug sold on website including Viagra, Prozac, tramadol and amitriptyline

Grazia found notable differences in the marketing strategies used by websites that required prescriptions (shipped discreetly, no consultation needed) versus those that did not require prescriptions(Cheap, Privacy guaranteed, no prescription needed, legal to buy on-line).

She noted differences in the side effect profiles for Viagra, Prozac, tramadol and amitriptyline noted on websites that require prescriptions differ from those that did not require a prescription;
- tramadol (no difference in side effects reported from both types of websites)
- Prozac, amitrypline (websites that do not require prescriptions declared side effects more often)
- sildenafil (websites that do not require prescriptions less likely to declare side effects).

I agree with Grazia that these on-line websites raise very complex issues but I disagree with her suggestion to rely on health education to make public aware of risks. While "law enforcement is costly and not very effective", I don't feel we can put the "onus on the patient to protect themselves". Despite legal and global challenges, it is sufficient to “make the best” out of it. There are very relevant safety concerns where more public protection is required.

In terms of the research design, I wonder whether there were alternative approaches to analyzing the websites. Personally, I would define them as "websites that sold prescription drugs", instead of "on-line pharmacies". I don't think it is appropriate to call internet websites that do not disclose their address an "on-line pharmacy". Of the internet websites that included their address, how many of them were accredited pharmacies in the jurisdiction they were located? Are internet websites selling prescription drugs from unknown addresses with foreign domains comparable with accredited pharmacies that sold prescription drugs online? Labeling the websites as "on-line pharmacies" may inadvertently bring certain characteristics to illegitimate websites.

Also, I wonder whether differences in coding the internet sites might generate different insights.

It was unclear why some of the analysis was done on certain drugs (Viagra, prozac, tramadol, amitryptilline). Were quantitative methods used to determine that they were the most frequently identified drugs sold on the internet? My question on whether controlled drugs were sold on the internet relates to differences in law enforcement mechanisms.. controlled drugs may be considered under “drug trafficking” laws with international implications.

I appreciate the wonderful work done by Grazia and look forward to learning more on how to use quantitative methods in qualitative research.

Here abstract is available at the Medicine 2.0 website.

Designing a User-Centric Remote Patient Monitoring System to Facilitate Heart Failure Self-Care

Medicine 2.0 ’09 Congress
Session: Usability and human factors on the web
September 18, 2009 1:30 PM – 3:00 PM Room CR2

Speaker: Emily Seto

Topic: Designing a User-Centric Remote Patient Monitoring System to Facilitate Heart Failure Self-Care
Link to Abstract: http://www.medicine20congress.com/ocs/index.php/med/med2009/paper/view/269

Guest Speaker Emily Seto delivered a lively presentation about a self-care device designed to help heart failure patients monitor their condition from home. Her talk highlighted how a Remote Patient Monitoring (RPM) tool developed in the Centre for Global eHealth Innovation, has an important role to play in helping those with this chronic disease manage their condition effectively. According to Ms. Seto a study involving 110 heart failure patients was undertaken to: (a) examine the frequency of performance of self-care behaviors, (b) describe personal and environmental factors that affect self-care behaviors, and (c) describe the relationship between the level of knowledge patients have to empower their performance of self-care and the actual performance of self-care behaviors.

What made this chronic disease a good candidate for this study?

· Over 500,000 people in Canada suffer from this disease
· Treatment of this disease accounts for 1 – 2 % of healthcare expenditures because of high hospital readmission rates
· There is low compliance in self care management because patients need to monitor their own symptoms and frequently have low self confidence to do so
· There was a high comfort level for mobile phone use amongst target group, many of whom are older

The good news is that medication interventions and lifestyle changes help prevent complications and hospital readmission. Patients who seek help when they should, also have better health outcomes. It is estimated that is that 1/3 to 1/2 of relapse problems can be prevented if good self care is practiced. However in many cases improper observance of treatment leads to relapse.

Clinicians and patients were consulted in gathering the requirements for the RPM device. The effort was to create a user-centric product that reflected the preferences of users and clinicians while striking a balance between the principles of simplicity vs. flexibility. From a clinician’s perspective, they need to know how patient is doing with medications, for example if there are daily problems and they need to be appropriately alerted. We learned that heart function decision making is very complicated process and clinicians have different perspectives for rules. From a patient’s point of view, they were looking for simplicity and ease of use. Feedback from both user groups was gathered through the development cycle and there were several rounds of usability testing with participants.

In looking at results of the pilot, clinicians in general saw the RPM device as type of security blanket. Others recognized that given the clinician shortage, RPM is huge opportunity to support heart failure patients.

Findings about clinician concerns:

· Not having time to follow up on alerts
· Suggested that a nurse practitioner be retained in future trials to pay attention to alerts,
· Knowing when to call a code based on individual patient
· Liability for taking actions on messages
· Need a way to document that they did take some kind of action when they received a message

Patients viewed the device as providing some additional help in follow up care. They were encouraged to log weight, blood pressure, ECG rate and symptoms at home. Non-compliance resulted in patients receiving phone calls and email alerts.

It was interesting to note the following input from patients about using the RPM.

· Some users expressed concern about false alerts
· What to tell emergency doctor with respect to the device’s instructions to call 911.
· There seemed to be a disconnect in uderstanding between what system tells them to do and what is actually going on physically

In conclusion, patients and clinicians have their own perspectives about remote patient monitoring priorities and there is a need to balance the concerns of both groups. I agree with Ms. Seto’s suggestion that iterative feedback is paramount so that each version of the system can be improved. It has been shown that the success of home monitoring depends on system being used. What’s next for ongoing development of this product? Ms. Seto explained that there is an expanded randomized control trial underway. Subjects are currently being recruited. The study will gather quantitative and qualitative data for 6 months to in an attempt to illustrate the impact of RPM on self care and clinical care.

Another positve aspect is that this work represents a milestone in patient management for a relatively low cost. Certainly behaviourial change is a big part of the adoption challenge. During question period it emerged that spouses or caregivers often complete training with patient. It was acknowledged that they are often instrumental to ensuring adherence to the program. This blogger’s opinion is that as much as possible self-care tools need to be tailored to the patient’s situation to ensure systems are user-centric and that there is successful uptake. Getting caregivers and family members involved up-front in development cycles and subsequent training will help enlarge the potential that self care methods will be followed.