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The first presentation of this afternoon’s parallel session is Andrea Cortinois, talking about ‘PESCA: developing and open source platform to bring eHealth to Latin America and the Caribbean’. PESCA is a virtual network based around open source solutions for use in low and middle income countries. The idea is to address a range of health problems through use of ICT, and create opportunities for local developments and contribute to local socio-economic developments. Much of the development will relate to local resources developed in Spanish, and of a repository of materials based in a virtual social network. An aim is to bridge gap between developers and users.
The second presentation is probably the mostly eagerly anticipated, especially by the geek brigade. Jen McCabe Gorman and Maarten Den Braber presenting ‘Nexthealth – an open source, web-based tool determining ‘what’s next’ in the evolution of consumer-centric care delivery’. Jen began by explaining that the presentation would be more ‘conceptual’ and aims to encourage discussion; she says that she and Maarten are ’social entrepreneurs’. Jen sees the development of consumer-centric care, that might be accessed online and off at will. Maarten asked whether are already beyond Medicine 2.0, and whether next year would be 3.0, 4.0 or beyond – hence the safe term ‘Nexthealth’.
Jen says there are 3 types of people – innovators (ideas), interrogators (critics) and implementers (doers). Maarten says it’s ‘always about people’, not the technology.
The presentation for the session is at: http://www.slideshare.net/tag/nexthealth
What are the business models and how do people get paid, jen asked, in new emerging models of healthcare? (on Twitter, I ask – how does the model work in UK and other healthcare systems??). One development ‘American Well’, which is due to roll out in 2009, has addressed this and agreed systems of payment for patients to interact online with physicians, for example.
Maarten says there are 3 things the model helps with – eg decision support in helping people/patients come to decisions, eg type of diabetes insulin pump. Consumers have options, people can be pointed to other resources and information developed by other people and organisations.
First question – healthcare goods cannot be compared with other types of goods and services, says the questioner (viz the disclaimer from the presentation). Jen says this is new ground, and there is evidence healthcare is becoming more commoditised. Another questioner (who uses an insulin pump) says she made the decision, based in similar parameters to how she would choose mp3 player. Rod asked how the model applies where there is not a commercial driving force, eg social medicine through taxation. Jen says payment is the invisible factor, and it is not inherent in the model and consumer is not limited by where the cost is dealt with, but their model can still be used to guide decision-making and choices. Maarten points out that, as he and Jen come from different countries and healthcare systems, they have already had discussions around differing healthcae systems and fee/payment/taxation/reimbursement models.
Another questioner says model works for those ‘not too ill or old’ -but how does it work for those who are? - the complexity and co-morbidity often found in care of elderly. Not sure I followed Maarten’s answer to the question and how the model works. Issue was also raised of ‘citizen’ versus ‘consumer’.
Jen says code will be available as open source API.
The presentation generated a lot of discussion, which will doubtless continue after this event.
Technorati Tags: Medicine 2.0, Toronto, JMIR, krew, semantic web, open source 
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The first speaker of this session is Luis Luque, from Tromso in Norway, talking about ‘Study of the ePatient as a provider of health content in the Internet’. he began by taking about the numbers of people creating video and other rich media content about health and disease conditions. Luis is doing a PhD studying issues around content created by patients on the Internet; he found few studies and little literature on this; much of what exists relates to patients an consumers of information/materials, and little about them as providers/creators of content. Can Web 2.0 result in increae in quality of online health information, or does the amount of material, which may not have authoritative basis, result in general lower quality of information? Does it result in collective intelligence? Or is it a real issue that we need to consider?
He undertook a survey looking for bogs, videos, etc and found 29 respondents to undertake the more detailed questionnaire/study. He was looking at views on patient generated content (PGC), and issues around confidence in the nature/source of the content, and how they would react if the information/indication of the PGC differed from that providers by their doctors. He also explored the motivations of patients who generate materials. He found similar levels (about 17-18%) of complaints and negative portrayals about ptients in doctors’ blogs and doctors in patients’ blogs. The motivations of content creators are sharing support and knowledge. He says patients should be seen as providers, not just consumers, of content. Suggests the need for guidelines (eg HoN) to be adapted to support PGC - eg, an ‘ePatient Blogger Code of Ethics’.
Further information is at myhealthservice.itek.norut.no
The second speaker is Joanne Mayoh, from Bournemouth University, talking about ‘Will the development of Web 2.0 technology result in a preference for quantity over quality?’ She is a PhD student, and began by describing her journey of understanding about Web 2.0 and its potential, and issues of quality of online health information. Mention of : http://www.timesonline.co.uk/tol/life_and_style/health/article3683186.ece
Online quality issue or raising skills of public in evaluating online health information?
The third speaker is Sheryl Mitchell, from Women’s College Hospital in Toronto, talking about providing women with tools for evaluate online health information. She introduced the ‘women’s health matters’ website (http://www.womenshealthmatters.ca/) and the French language version (http://www.femmesensante.ca). The sites support discusion forums on health issues, and personal stories of heath experiences. They have produced a toolkit to help women locate and use online health information: http://www.womenshealthmatters.ca/toolkit/index.html
The final speaker, Cornelia Van Uden-Kraan from University of Twente in The Netherlands, talked about ‘Empowerment of participation in online support groups for patients with arthritis, fibromyalgia and breast cancer’. She looks at the different types of online support groups (discussion forums, chats and email-based groups); she says there is no direct evidence for patient empowerment arising from participationin online support groups. She described a study of empowerment through participation in these groups; went to several groups and asked owners for permissions to approach participants. She desribed levels of empowering processes, including exchanging information, being better informed and enhanced social wellbeing, as well as feeling more confident about treatment and enhanced self-esteem.
Technorati Tags: Medicine 2.0, Toronto, JMIR, krew, eHealth, ePatient, online support
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Gunther and colleagues’ photos are available on Flickr: http://www.flickr.com/photos/30211781@N04/sets/72157607120617918/
and through the event’s Crowdvien site: http://medicine20.crowdvine.com/
Technorati Tags: Medicine 2.0, Toronto, JMIR, krew, Flickr, Crowdvine
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Alan Barclay, a librarian from University of Madison-Wisconsin, talked about ‘Developing an RSS-based current awareness service’. He started with discussing problems with keeping up to date with ‘the literature’, noting the short time professionals have each week to keep up to date, that publishers rather than content creators generally control what is available, and that often what is published relates more to academics getting tenure etc., rather than real desires to advance knowledge in any field. They have published 230 video articles in 18 monthly issues; current focus is on basic science research, and are moving to biomedical materials.
ebling.library.wisc.edu/rss (feeds page) projects.hsl.wisc.edu/rss (feeds project)
Alan described starting with the list of journals and divided feeds by subject/discipline, created OPML bundles and working links for ‘top’ journals in a field. They took the feeds created by publishers etc., and added formatting and social networking tools. The OPML bundles can be fed into whatever RSS readers etc people preferred to use (so no product/site lock-in). Beyond the text-based literature, they provide access to videos, podcasts, and other richer media materials.
Alan and colleagues are now looking to create custom bundles, using Yahoo Pipes to create ’smart feeds’, developing gadgets, widgets and toolbars, and exploring making much of the material available to mobile devices. Work has already been undertaken to develop Google gadgets, and that many of these things are relatively easy to develop with little technical skills. Alan believes that, through using many of these tools, people will be better able to keep on top of current developments and awareness in their fields/disciplines.
Oystein Eirling, from Norway, talked about ‘Implementation of Web 2.0 services in the Norwegian Electronic Health Library’. The Norwegian Knowledge Centre for the Health Services was founded in 2004; its main purpose is to gather and disseminate systematic reviews, and it also works to improve quality of patient information. The library exists to provide equality of access to knowledge, foster better quality of health services through knowledge, and to save time and money through national subscriptions to journals, etc.
In 2007, the portal was a ‘Web 1.0′, static, one-to-many portal; the content was not dynamic. A survey of Web 2.0 services was undertaken in 2008; this found few Norwegian Medicine 2.0 services in health sites. They began to use social media to collaborate within the library team, including blogs and Flickr to keep records of meetings and conferences. Wikis have been used to develop clinical protocols. In addition, the team are improving services outside the main website through Norwegian Wikipedia. They found problems with the quality of health information on Norwegian Wikipedia, and worked with students and halth professionals to improve the materials.
In the third talk of today’s parallel session I attended, Moshe Pritsker talked about ‘JoVE - online video publication for biological research’. He talks about the problems of understanding written descriptions of scientific experiments and techniques, and the ease with which video explanations make things easier to understand. JoVE - Journal of Visualized Experiments - http://www.jove.com/
Moshe described the established of JoVE as a journal, with scientific board etc., and the development of an international network of video makers to film experiments and provide high quality materials. At the moment the site is open access; it is supported by advertising and investment. Each video costs over $1000 to produce; JoVE owns copyright to videos.
Technorati Tags: Medicine 2.0, Toronto, JMIR, krew, RSS
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One of the issues that I mentioned in my presentation yesterday (>>>) was that much of the conference blogging we had been doing was more in the form of on-the-fly reportage, with little opportunity, due to the nature of the need to quickly capture notes, for an considered reflection on what we were covering. So, while I wait for the start of today’s sessions, a ew minutes to reflect on the first day of the event. From my perspective, it was an excellent day; opportunities to finally meet many people I have been in virtual contact with for varying lengths of time, and whose work (and energy) I have admired for a while. The presentations I went to were all very good, and the presentations had been nicely grouped into the sessions and within each session complemented each other well.
Rod, Margaret, Chris and I went out to dinner last night at Donatello’s, an Italian place near the hotel. We had a good meal, and to spare the guilty, will draw a veil over mention of who got most tipsy ;-)) We all seemed to agree that it had been a very good first day.
As Rod has noted on Informaticopia, there is a list of all the others twittering or live blogging from the conference at http://maartendenbraber.com/
Technorati Tags: Medicine 2.0, Toronto, JMIR, krew
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The first speaker is Panos Bamidis talking about using Web 2.0 for teaching medical informatics courses with postgraduate medical students. He explained the development/use of SCORM (Shareable Content Object Reference Model) learning objects, which does not seem to be being used as an educational standard within medical informatics education. He discussed how they had used a range of Web 2.0 tools within a problem/case-based learning approach. Coursework based in use of Web 2.0 tools, including participation in discussion forums, and use of personal blogs and contributions of material to wikis, is assessed as part of overall course marks. Evaluations show general positive results; many students admitting to looking at what other students had input to the systems before putting their own answers in.
Dierdre Bonnycastle, from Saskatchewan, talked about ‘Medicine 2.0 and Medical Faculty Development’ in a setting where 800 community faculty members are scattered in an area of over 250,000 square miles. She started off by using professionally-developed podcasts, which did not work as planned because of the expense of the technologies. In addition, people were not familiar enough at that time with the technology. She moved on to using wikis; she developed a post-workshop wiki, to be used following face-to-face workshops. From this, she developed a medical education blog, that was moderately successful. From this, she developed ‘committee wikis’, which bring together a store of documents relating to a committee and its work, and from this, to research wikis for research collaboration.
Another development tested was ‘post-conference wiki’, using wetpaint wikis as they also allow inclusion of photo galleries. She is now working on collaboratory wikis, for inter-university collaboration. The aim is to share ‘favourite teaching techniques’. She is trying to get both a broader audience and more people contributing.
Dierdre also introduced the use of Elluminate and its mixture of facilities.
Bertalan Mesko talked about ‘Medical education and building an online reputation in the world of Web 2.0′. He said that he gets much of his inspiration from use of Second Life for medical education. He discussed the use Second Life for simulations, case presentations and exercises. He illustrated uploading of slideshows for education purposes in Second Life.
He went on to talk about reputation, the problems of people putting materials onto Facebook that may come back to haunt them later in their professional lives. Berci is using microblogging services such as Twitter, and showed many other professionals using it; he also mentioned Friendfeed and what can be shared there. (I have put a few tweets on Twitter about berci and Rod’s sessions, but not sure how well these things link across and how easy it would be for people to follow).
Rod Ward was the last speaker, on ‘The potential and challenges of Web 2.0 in the education of healthcare professionals’. Rod started by talking about his experiences and biases; publishing web pages since 1992, using Web 2.0, and being in favour of open access. He noted that he ‘likes to challenge’ and prefers ‘eclectic’ models of education. He went on to talk about potential and challenges in ‘architecture of participation’; the potential of Web 2.0 is for focus being on content creation over content consumption, but focus in many institutions is the other way around.
Rod also explored issues of control, with tensions between moving control to students versus institutions wanting to keep control, and the tension between shared knowledge creation and levels of moderation and quality control. On technologies, he discussed the tensions between innovative/collaborative technologies, including mashups, versus students often being ahead of staff in use of technologies.
In concluding, he sees Web 2.0 and beyond have potential for use with healthcare professionals, although it needs balancing with challenges and how we might help institutions and individuals to take best advantage. Some students will use these applications whether institutions like it or not, and they need to be aware of changes, and more research is needed into whether the potential outweighs the challenges. ‘Rods presenation was following by a prolonged period of animated discussion that went on well past the scheduled finish time.
Technorati Tags: Medicine 2.0, Toronto, JMIR, krew, eHealth
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The first of four presenters in this session is Handy Amin, talking about ‘Planning the development of the Singapore National Health Portal’. This is being developed under the auspices of the Health Promotion Board. Handy outlined the vision within the context of the chronic disease challenge facing Singapore. Phase 1 of the development is planned for 2008-09, and encompasses features including patients’ self-entered records into stand-alone PHRs, and some health management tools around weight and diabetes management, and smoking cessation. These are designed towards helping people manage their own health. Additional features will include appointment booking, health education resources, and other facilities. There is a phased outreach strategy for the project/portal, working towards integration with EHRs in the longer term. Among additions being considered are functions in multiple languages, and ability to upload data from remote monitoring devices.
The second speaker, Jason Aprile, talked about ‘Providing online access to point-of-care information: lessons from the OntarioMD,ca physician portal’. Jason is web content manager. The portal is owned by Ontario medical Association, so is a similar model to the CMA portal that pat Rich talked about this morning. There are 3 linked sites, aimed at connecting physicians in the province (www.ontariomd.ca, www.emradvisor.ca, www.ontariomd.ca/groups) . Development is progressing through engagement with users and in response to user needs; has been based in needs of clinical workflow. Sought to identify physicians’ IT use patterns in the practice environment, and surveying users at various stages of IT use.
The third speaker, Grant Cumming from NHS Grampian Scotland and University of Aberdeen, talked about ‘e-Health in a remote and rural setting in the north of Scotland’. He says that changes in health acre are inevitable due to demographic change and other well-known drivers. He explained the background of development of websites such as ‘Menopause matters’ and ‘Miscarriage matters’. A study found that there were health improvements for people using the websites. ‘Babyfeeding matters’ website is the most recent development. They also have video links between Elgin hospital and patients at remote site; the system will be evaluated. Health-e-space.com is under development.
Jaime Jiminez Pernett talked about ‘Knowledge exchange nodes in public health’ and about practical experiences CVSP (Campus Virtual de Salud Publica - Virtual Campus of Public Health – which covers a number of Latin American countries and is organised under PAHO auspices - www.campusvirtualsp.org) and BPD (best practices in teaching and learning in public health – www.campus.easp.es/bpd/). Resources are being developed including open courseware, and repositories of information about public health.
Technorati Tags: Medicine 2.0, Toronto, JMIR, krew, eHealth
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Neil Seeman, from IBM Health care and Ryerson University, kicked off the second session with a talk titled ‘Inside the health blogosphere; governane, quality and the new opinion leaders’. Social networking analysis shows that ‘opinion leaders’ do not always enjoy status etc within traditional organisations. On social networks, ‘opinion leaders’ are everyday people writing about health problems.
He looked at what attributes leading health blogs share. For patients, the benefits of health blogs include navigating the continuum of care, empowerment; for health profrssionals, include collaboration, knowledge management; from hospital perspectives, the literature is scant and largely anecdotal, but include philanthropy, patient self-care and educational activity.
Blogs are increasingly breaking news stories, and of increasing importance as newspaper circulations decline. Vast majority of health blogs are not affiliated with large traditional media organisations. General interest blogs tend to do as well as newspapers in reporting important medical/health news, Neil Says from his study. He developed a blog governance score as part of his study, and found there was lack of overt partisanship in health blogs around the world, lack drug industry sponsorship, have full or partial moderation by subject matter expertise. He found an inverse link between his blog governance score and user traffic, and negative correlation between comprehensiveness of news and traffic density. Subject matter expertise monitoring matters, and is positively correlated with quality governance and traffic density. Health blogs and can and should do a better job in promoting user privacy.
We now have out bloggers’ panel. I am part of the panel, but will try to blog some of the material - Rod’s blog will doubtless have other material. The panel was organised and is being chaired by Bertalan Mesko (www.scienceroll.com). Jen Mccabe Gorman kicked off the panel, by talking about business blogging. Her personal blog is Health Management Rx (http://healthmgmtrx.blogspot.com). She talked about cross-pollination and meetings others through blogs and twitter etc. Why blog about cross-pollination, she asked? - she says it opens lines of comunications. Her talk was very much about uses of blogs within health/business environments. To engage audiences, she says bloggers need to be honest, and not rry to hide behind anonymity etc. I was next speaker; my presentation is at http://docs.google.com/Presentation?docid=ajjz7ngrhqv6_74cp2zhfcw&hl=en_GB
Keith Kaplan, from Mayo Clinic Dept of Pathology, was the next presenter. His blog is at www.tissuepathology.com, which is a digital pathology blog. He explained what digital pathology was about, including image analysis, virtual microscopy, telepathology and research and education in the field. Digital pathology is effective due to persistent slides being available in a single respository. Keith explains that he blogs because someone talked him into it, and aims to provide academic blogging (which is often less personal), and is useful for social marketing and networking. He also looked at why physicians blog, and suggests it allows them to amplify their perspectives, provides personal reflections on practicing medicine, and may work to expose fraudulent practices and propogate new ideas or concepts within their areas of practice. He suggests may help more people in a day with a blog post than in a year through peer-reviewed publications.
‘Good blogs are discovered, not marketed’, Keith says.
Sam Solomon works in Canada and is a reporter by trade, and says he is one of the few health bloggers who is salaried. He did not have any slides (citing ‘death by powerpoint’ as a very reasonable reason not to have them). He talked about an example of a physician who started a blog, but remained anonymous. His story highlighted the problems arising from anonymous medical/legal blogging, including ease of saying things through blogs and not thinking through the possible consequences. Bertalan Mesko was the final presenter, talking about how medical blogging changed his life. he started his own medical blog in November 2006, creating Scienceroll (www.scienceroll.com). Through using RSS feeds, he can keep up to date with many journals, and makes use of Second Life, community social networking sites, creates and maintains blog carnivals.
Technorati Tags: Medicine 2.0, Toronto, JMIR, krew, blog, blogosphere
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Pat Rich, Director of Online Content from the Canadian Medical Association (cma.ca), gave the first keynote about Asklepios, the CMA’s new social networking site for Canadian physicians (http://www.asklepios.ca/home.php). The site is just over 2 weeks old. The site was developed following member demand; many physicians are already using Web 2.0 applications for a variety of purposes, and the site is seen as key to member engagement and communication, and it is hoped that this will eventually lead to better patient outcomes.
A recent e-panel survey of 500 respondents found that 26% were already a member of a social netwirking group, and 32% were a member of a professional Internet networking group. In referring to lessons from other sectors, he emphasised that it is the conversations that are occurring in the area, ratherthan any particular technologies. The site is for physicians only (authenticated) and hosted in Canad, and aims to be ‘hands off’ on the nature of conversations, to allow legitimate discussion, even criticism of the organisation. An early pilot site was set up and tested on Ning. The site allows for setting up of discussion groups, allows creation of profiles and other groups, andmembers can have private or public discussions. The aim is to add in photo albums, RSS feeds and blogs, and many other Web 2.0 applications.
The second keynote(s) is from “Patients Like Me” (http://www.patientslikeme.com/). Jeana Frost and Michael Massagli (Michael was the actual speaker) presented on social uses of health information, and a bout a project investigating ways in which patients respond to the shared use of personal health data in the PatientsLikeMe online community for patients with ALS (amyotrophic lateral sclerosis). A paper on the study has been published in JMIR (>>>). The site aims to facilitate patients finding similar patient, who can then share private information, and learn about treatment options that others may be experiencing. Structured and unstructured data is entered by patients themselves, and is then summarised in their profiles. PLM charts the course of the patient’s disease and how it impacts their lives.
The analysis in the study focused on qualitative analysis of the comments in profiles, which are available to all users. More than half the comments relate to auto-generated comments. An analysis of about 500 other comments showed that people were using them to target questions to others with relevant experience, to advice and recommendation, and to forming and solidifying relationships based in similarity - so, evidence of a real community developing. Evidence shows that patients are creating new knowledge by accessing their own and others’ data; may be contributions to positive outcomes. The study is preliminary, based in one community, but they will be seeking to replicate with other communities.
Rod is blogging on Informaticopia, and Jen McCabe Gorman is providing extensive Twitter posts on the event, as is Bertalan Mesko. Will provide links to other bloggers, twitterers (?!), etc as I find them.
Technorati Tags: Medicine 2.0, Toronto, JMIR, krew
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Medicine 2.0 has now started. There is a good crowd of people here - there are 180 registrants from 19 countries, and the event is sold out. There are a lot of laptops being used here - including Rod and Margaret, here at the same table as me.
Gunther Eysenbach gave an introductory talk, starting by talking about his recent experience of the Canadian healthcare system after a traffic accident between him and his bike, and a taxi. He then went on to outline apomediation and disintermediation, which he has talked about in JMIR. he introduced the idea of PHR2.0, which might interact with other EMRs and other peopel’s PHRs.
He closed by raising some questions that might be addressed during the event, including implications of Web 2.0 for health policy, what are the roles of academia, governments and providers, what are the specific requirements for health-related social networking applications, whether the ‘hype’ is supported by evidence.
Technorati Tags: Medicine 2.0, Toronto, JMIR, krew
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