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PhD Thesis "Online Peer Support for Patients with Somatic Diseases" –
Friday, November 21st 2008, University of Twente
Mrs. C.F. van Uden-Kraan took her doctoral degree on Friday, November 21st 2008 at 16:45, Spiegel building University of Twente. She defended her thesis called ‘"Online Peer Support for Patients with Somatic Diseases". Shortly before, at 16:30 Ms. van Uden elucidated her research. A reception took place afterwards.
Outcomes of online peer support research
Van Uden-Kraan’s work concerns the participation of patients with rheumatoid arthritis, breast cancer and fibromyalgia in online peer support groups. The main research questions ask
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to what extent do people make use of online peer support (forums, discussion groups); |
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what are the (dis)advantages patients experience; |
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to what extent patients feel empowered by participating. |
With the availability of the internet, so rose the opportunity to share concerns and experiences with peers on line. Owing not only to the ease of on line peer support (anonymity, lack of geographical barriers, accessibility) but also to the ever increasing number of internet users it was expected that more and more people would seek contact with peers through this medium. A growth in on line peer support seems to be a promising development because of the potentially positive functions of peer support such as an increase in quality of life and knowledge. However, participation may also have negative consequences such as an increase in fear, uncertainty or depressive feelings. The absence of verbal communication and the lack of formal behavioral rules as well as reliability and quality issues may add to existing concerns about the impact of on line peer support.
Van Uden conducted several studies with regard to such matters. For example, she analyzed the content of contributions to internet discussion groups with regard to aversive consequences mentioned in relevant scientific literature. A random sample of 1500 messages was taken, coded and judged by medical experts. The outcomes indicate that the known disadvantages rarely occur. The exchange of medical information was mostly conventional and never harmful to other users. The participants generally showed respectful behavior and did not express criticism, ignorance or terms of abuse.
From another quantitative and qualitative study into the extent of empowerment Van Uden concludes that participants in various on line discussion groups feel empowered in several ways. They feel better informed while some feel more confident with regard to their physicians. Many respondents were more convinced of the treatments described to them and felt more able to make decisions about their therapies.
In spite of these favorable outcomes only a small percentage (15%) of the target groups of patients with rheumatoid arthritis, breast cancer and fibromyalgia have ever participated in on line peer support groups. Of those who did participate, only 4% actively posted contributions while a vast majority just read the posts of others.
Prejudices seem to hinder online peer groups. Such as the prejudice that on line support is meant for those who cannot cope with their disease, or those who are old and lonely. In addition, many patients are not aware of the existence of online peer support groups. With regard to the outcomes, Van Uden-Kraan suggests to develop an intervention to increase the number of participants in general.
This PhD research has been financed by ZonMw, the Dutch Arthritis Association and the Comprehensive Cancer Centre Noord-Oost (IKNO).
Medicine 2.0, September 2008
Medicine 2.0 is a new annual conference on Web 2.0 applications in health and medicine. One of the organizers is the Journal of Medical Internet Research . Dr. Gunther Eysenbach MD, MPH is editor-in-chief of JMIR and visiting professor at the Centre for eHealth Research. Below is his personal account of Medicine 2.0.
Prof. Dr. Gunther Eysenbach at Medicine 2.0, September 2008 Toronto, Canada.
The time has come!
It is easy to dismiss some of the "hype" around Web 2.0 as a marketing gimmick or rhetoric geared towards attracting venture capital for Web 2.0 startups. However, most Internet researchers and developers probably also agree that recent advances in web technologies and user interfaces have greatly changed the design, appearance, stickiness, and pervasiveness of Web applications, and in many cases transformed the way users interact with them.
The emergence and broad adoption of Web 2.0 technologies and approaches coincide with the more recent emergence of Personal Health Application (PHA) Platforms [also called Personally Controlled Health Record (PCHR) platforms] or "health record banks" such as Google Health, Microsoft Health Vault, and Dossia, where data is—at the request of the consumer—pulled from various sources (including electronic health records). As eloquently argued by Mandl and colleagues in the New England Journal of Medicine, these developments represent "tectonic shifts in the health information economy” with far-reaching consequences for patient involvement, as the gravity shifts away from health care providers as the sole custodian of medical data.
It is easy to imagine that the combination of both trends—Personal Health Records combined with social networking, what I have called "PHR 2.0" — may lead to a powerful new generation of health applications, where people share parts of their electronic health records with other consumers and "crowd source" the collective wisdom of other patients and professionals. Advances in genetic medicine will further personalize and tailor health information, based on data stored in personal health records.
What is perhaps most significant about this development is that the "openness" philosophy of Web 2.0 tools will also raise the expectations of the Facebook generation in terms of dealing with their health data. Web 2.0 savvy consumers will push the envelope and demand more than just an institutions-specific "portal" (also called "tethered PHR") which allows them to view or access their data but not to do anything else with it. Patients 2.0 will demand full control over their data (as a minimum, XML export!). Many current Medicine 2.0 applications fall short in that regard, in that people can feed information into the system but can't get it out again (GE).
The Journal of Medical Internet Research has just published a theme issue on Medicine 2.0, and is organizing an annual Medicine 2.0 conference . For further information on Medicine 2.0 see Eysenbach G Medicine 2.0: Social Networking, Collaboration, Participation, Apo mediation, and Openness J Med Internet Res 2008; 10(3):e22
NB. The 2009 conference on Medicine 2.0 is scheduled to take place on September 17/18th, in Toronto, Canada.
UT Centre for eHealth Research at ‘Medicine 2.0’, Toronto, Canada.
A delegation of the UT centre for eHealth Research visited Medicine 2.0 in Toronto, Canada, September 2008 (see picture below). Academic objectives were the presentation of research [lectures of Drs. N. Nijland, Drs. N. van Uden-Kraan and Drs. S. Kelders are published at www.jmir.org/2008/3/e22/ (free PDF)] and to further discuss cooperation in research.
Members of the delegation of the UT centre for eHealth Research at Medicine 2.0, September 2008 Toronto, Canada.
An impression: “Toronto is a lovely city and we had a very warm welcome by Dr. G. Eysenbach. The atmosphere of the conference was pleasant, the environment encouraged discussion and openness among the participants and presenters. The next generation of health researchers was present. We learned a lot about the functioning of virtual communities and we met several important researchers. Besides that we visited the multitasking lab of the centre of global eHealth innovation which functions as an example for the design of the lab of our faculty. Also, we met with Dr. Shirley Fenton, director of the institute for health informatics, University of Waterloo. Their motto ‘E-Health is not just about IT’ represents our ideas about supporting health by technology. Their transdisciplinary approach is aimed at social and behavioral aspects of implementing technology in health care, and their research provides opportunities for cooperation, especially in the field of disease management” (Gemert L.V.).
Drs. Nicol Nijland at Medicine 2.0, September 2008 Toronto, Canada.
Dutch Minister of Health informed on eHealth developments
In September 2008, Minister of Health Dr. Ab Klink visited the UT to open the Academic Year 2008/2009.
He was extensively informed on the outcomes of current eHealth research and the ambitions of the new Centre for eHealth Research. These perfectly fit both UT’s objectives to stimulate interdisciplinary cooperation in governance, (health) behaviour and technology as well as policy aims with regard to a patient-centred care system and innovation.
Prof. Dr. Erwin Seydel (right) presents UT- research on eHealth to Dr. Ab Klink (left), Minister of Health
PhD-students in discussion with the Dutch Minister of Health
