Health 2.0 takes a page from the Web 2.0 playbook to enable the health consumer (formerly known as "patient") to also become engaged in their health and wellness. Here we have on-line support groups and condition-specific forums. We have our health information becoming accessible with tools to make it actionable (via personal health record offerings from Google Health, Microsoft HealthVault, and others). We even have on-line forums for medical professionals, enabling physicians to have peer-to-peer social networking (Sermo).
Health 2.0 brings great potential for improving individual wellness as well as public health, but what are the implications for clinical research? Should we anticipate “Research 2.0”?
In its most primal form, Research 2.0 could mean new ways to find patients that may be interested and eligible for clinical trials. Inspire builds strong on-line communities of patients around specific conditions and diseases, then makes clinical trial matching available to these communities.
At another level, PatientsLikeMe.com has demonstrated the willingness of patients to share personal health information and experiences for the benefit of their patient communities. Registered users (and there are several thousand) share functional status, medication and supplement use, and other interventions. As a result of this information sharing, PatientsLikeMe has found a novel Research 2.0 tool – patient-initiated research.
The patients in this community wanted better data to understand if Lithium is of benefit to patients with ALS. In the spirit of “Research 2.0”, these patients are now sharing their experience – via structured, quantitative data – and creating a dataset including the clinical experience of several thousand ALS patients.
A future with Research 2.0 brings opportunity and risk. Patients may be recruited for trials through communities, but patients may also freely create a discussion forum within a community to discuss experience within a particular trial. Imagine a significant percent of the subjects in your randomized and blinded trial virtually “talking” with one another and exchanging experiences and observations. This is a reality one needs to anticipate.
Physicians have long been concerned about Web 2.0, with patients seeking health information on-line and the risks of user-generated content. But there is more to worry about than whether Google can get a diagnosis correct.
Pharma has its own fear of patients in a world of Web 2.0, with concerns over inappropriate identification of safety signals (FYI, any known adverse experience linked to a specific drug that can be traced to an identifiable patient with an identifiable reporter must be reported to FDA).
The dialogue can not be stopped, and so risks (and potential benefits) must be understood. Some (see BMS and Novartis unrestricted grants for social networking) are already seeing this potential
2 comments:
I would proceed with caution. It's important to fully understand data before conclusions are drawn and behaviors are changed. The best "Research 2.0" will include scientists and physicians to guide the process. With a lifeguard or two at the pool, lots of people can enjoy a good swim.
http://getbetterhealth.com/consumer-generated-clinical-trials-research-minus-science-gossip/2008.11.18
Research 2.0 should be about improving communication from bench to beside and back again. Clinical development suffers from this almost complete lack of knowledge exchange. Web 2.0 knowledge networks are a great example of the maturing technology that is becoming rapidly available for Healthcare and Life Sciences. A great open-source example of this is Jumper Networks (www.jumpernetworks.com)that provides a Web 2.0 knowledgebase.
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