Friday, September 05, 2008

Medicine 2.0 conference - Day 2

The second day starting with parallel sessions. I attended a panel discussion on Methodological Issues and Challenges in eHealth Research with Judy Proudfoot, Lisa Whitehead and Caryl Barnes.

Lisa described a systematic review of methodological and ethical issues in eHealth research.The issues fall into sampling, ethics and reliability and validity with many issues around moving these from paper systems to online systems. The size of samples may or may not overcome issues of bias. Some of the potential produced around tracking IP addresses and pages visited but difficulties in getting a random sample led to the use of propensity scoring. Unsolicited email gets low response rates which were compounded by technical issues of browsers and passwords, security measures, computer anxiety etc. Ethical issues related to obtaining consent, protecting anonymity and security particularly in opportunistic research. Particular issues arose in using forums and similar collaborative tools. Using the web as sources raise issues around the level of disguise, perceived privacy and questions about whether researcher are lurkers. Further considerations need to be given to reliability and credibility related to linguistic competence, cultural differences, repeat participation and misinterpretation of self. Further problems with construct validity based on psychometric properties were also highlighted. Some questions arose about whether online samples or "real life" samples are "real" and maintaining participation.

Judy Proudfoot from the Black Dog Institute developed further on the sampling issues, based on research she is leading on people with Bipolar disorder undergoing an online education program. The difficulties with recruiting and low response rates have led to requirements for mixed methods but still doesn't provide random sampling. They are currently looking at whether the use of mobile phones might help with recruitment. A question about unsolicited emails and texts, and compliance with regulations led to further discussion.

The next section was led by Caryl Barnes who examined ethical issues which arose as part of an evaluation study on an online support program 'HealthSteps for Bipolar disorder". The road of the study through an Ethical Committee and the underlying moral codes covering privacy/confidentiality, informed consent, randomisation, risk/benefit ratio etc and most problematically the Duty of Care which led to a "red flag" system which led to withdrawal and contact with the patients clinician if life threatening/suicidal tendencies were identified. Some compromises with the commercial company running the program during the course of the study, they also found that not enough identifying details had been collected. They found that many participants had not read the Participant Information Sheet and this led to lots of further questions.

Lisa then covered some of the measurement issues based on a qualitative and quantitative survey of the health of tertiary students, examining whether there were difference between online and postal responses illustrated with copious statistics. The online and postal groups were close in the number of respondents, gender, ethnic origin, overseas students etc. Online participants were more likely to drop out as different measures were completed page by page and some did not complete all of them, but this level was not significant. Online respondents were seen to have higher fatigue scores than those who completed the survey via a postal system.

A variety of questions and comments from the floor then widened the debates and highlighted some of the current challenges for good new guidelines setting standards for behaviour in this area.

After coffee the next session I attended was about consumer empowerment, patient-physician, relationship and sociotechnical issues. The first presentation was by Luis Fernandez Luque from Norway. He described the number of blogs, web sites, videos and social networks etc where people are sharing information about their health conditions. He has studied these to find out whether these should be recommended to other patients. Over 100 were invited to the study and 29 completed surveys were received. He found patient generated content was rated highly for emotional support, but there were concerns about drug companies and others putting information up in this format. Many of the respondents considered changing their treatment or doctor based on information their had received from sites with patient generated content. They did not consider their privacy a problem and posted photos and a range of personal information. 17% published complaints about their doctors - mostly without identifying them. Existing codes are aimed at health professionals so he suggested the need for a code for epatient bloggers. He played a You Tube video of a patient with Multiple Sclerosis who is creating and publishing a video blog who had sent a message to the conference. Questions again raised issues around protection v empowerment and arguments about the creation and compliance with a code of ethics.

The next presentation was by Joanne Mayoh a doctoral student talking about - "Will the development of Web 2.0 technology result in a preference for quantity over quality?" She set out the use of the Internet to search for health information. Issues of Information and IT literacy meant that vast quantities of (possibly inaccurate) information can lead to greater distress than in other areas. She argued that wikis blogs and social networking as well as increasing quantity could also improve quality through Darwikinism particularly through the process in wikipedia and similar sites. Becoming as accurate as encyclopedias and challenging the criteria being used to judge the quality of online health information. Therefore she is focusing on the balance between online quality or public ability enhancing peoples skills in assessing the quality of information. She challenged the points made in the Times article "Ten ways to wind-up your GP" and what the response of the GP should be to people who bring print outs from the Internet. Her work with support groups members with chronic illness have low levels of Web 2.0 knowledge and what she can do to improve this. Questions discussed different routes to education both for patients but also for GPs.

The next presentation "Women wading through the web" by Sheryl Mitchell was about a toolkit Womens College Hospital has produced to help women find and evaluate information for this target group. She demonstrated the womenshealthmatters web site, and showed how the learning from this have led to the development of the toolkit. Well documented concerns about patients ability to evaluate online information was reprised and useful tools selected and tested, and reminded me of the work we did with the NMAP project which became Intute: Health and Life Sciences.

The final presentation of the session was by Cornelia Van Uden-Kraan from Twente University who talked bout her work examining empowerment by participation in online support groups via discussion groups. She highlighted the difficulties and lack of tools for the measurement of empowerment. Her team carried out qualitative and quantitative data collection to identify what processes and outcomes contributed to empowerment amongst participants in online support groups, which were similar between different diagnostic groups although the level of activity did vary.

After lunch I attended the theme Semantic Web (Web 3.0), Open Source. The first presentation was about PRESCO an attempt to develop an open source social network and architecture. He was presenting for colleagues who had found a variety of benefits for low and middle income Spanish speaking countries.

They were followed by Maarten Den Braber and Jen McCabe talking about the Nexthealth model trying to look at healthcare in the future and the balance between patient & professional, bricks & mortar & virtual & then the 4Cs. I got so involved in this presentation and the ensuing discussion that I didn't atke many notes - but I will find links on the web and add them as I found this the most interesting session of the conference.
* Nexthealth on the way
* Next Health Elevator presentation

The final plenary was Risk 2.0 by Joan Dzenowagis,(WHO) Kevin Clauson and a missing colleague from Microsoft which used an audience response system. They highlighted the blurring of legal & ge boundaries & lack of control. The amount of poor information found by search engines led to a question to the audience to identify what people thought would help, and then moved on to Internet safety, data scandals and trust. This was then applied to health records. She used lots of examples from the UK about data risks and hospital rating systems. She also discussed Wikipedia and its rules and guidelines, and the ways in which PR/drug companies try to manipulate it. She highlighted risks of open editing & identified problems in identifying liability. She also talked about changes in publishing models and their possible effects.

Kevin Clauson then followed with risk benefit analysis for professionals and patients. He saw risks of liability for professionals interatcing with patients online. He highlighted emails and blogs as greatest risks because of the tone and the way in which specific individuals can be identified. The Dr Lindeman/Dr Flea case highlighted in the bloggers panel yesterday. He discussed ethics & blogging, social networking sites. He tried to balance the negatives and risks with potential benefits. The risks to pharmaceutical companies made up the next part of his presentation, moving from direct-to-consumer marketing (which is only allowed in the US & New Zealand) across the web, with worries about off label claims, but could be a cheap advertising option. He concluded with issues about risks for patients inherent in blogs etc being hosted by pharmaceutical companies, and using personal health information. He also talked bout a study of drug accuracy and completeness in wikipedia. Some good topics,including economic and social change issues were raised in the question and answer session.

The conference then closed with thanks to organisers.

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