The social patient network CureTogether reported in February the results of study among 227 people who rated 31 treatments for bipolar disorder. It is one of the first such studies that blend social media, patient-stated outcomes with integrated therapy options.
“Patients rate regimented sleep, reduced alcohol, and exercise as helpful for their symptoms, as well as yoga, mindfulness meditation, and Lamictal*.”
Here is an infographic CureTogether posted on its site:
This report is emblematic of at least three emerging and converging trends that will have long term consequences on the study and application of health and healing options:
Social media as an organizer of patient-centric experience and preferences.
Evidence of greater efficacy of non-drug solutions for some conditions.
The blending of both of these with the new class of personal genomic information companies.
This blending was recently illustrated when CureTogether was acquired in June by a leading personal genomic company, 23andMe. (A press release is here.)
I have observed that both social media and integrative health options have plowed their way inside the confines of the health care establishment at the hands of individuals, as patients or as consumers simply seeking health improvement. It is hard to imagine that these trends will not continue. As consumer DNA enterprises like 23andMe — already embedded in the digital social fabric — continue to respond to individual preferences and personalization, it is probable that this blending of socially defined health outcomes, personal DNA, and the observed superior efficacies of some integrative, non-phrma options will become more defined by research results. (See this blog post by NIH/NCCAM Director Josephine Briggs on its research plans for non-drug options for pain.)
Other important patient-centered condition communities like PatientsLikeMe.com and armyofwomen.org (breast cancer) have also prepared patient resources for research purposes.
The caveat for all of them, at least when organized around patient-reported research, is stated by CureTogether in its bipolar study report:
…with each of these findings, there is a potential bias in patient self-selection and recall. We present these findings as just what they are – patient-reported data – to stimulate discussion and generate new insights for further research.
Studies like this will add credence and value to research based on patient-reported outcomes, which could play an important role in more precisely defining the framework for controlled trials so that resulting evidence will be more valuable to practitioners, policy makers and the public.
Although the newly established Patient Centered Outcomes Research Institute (PCORI) has yet to weigh in on the use of social community-originated and patient-defined research, its commitment to greater involvement of patients in research can’t really be focused anywhere other than the digital social landscape, where communities of patients suffering from similar conditions is already well entrenched. The social and digital framework will only become more significant as the work of CureTogether and others continues and as smartphone apps and social connections become standard for the majority of citizens and for health practitioners.
* – Lamictal (lamotrigine) is an anti-convulsant used either alone or in combination with other medications for epilepsy patients, it is also used to delay mood episodes in adults with bipolar disorder ((From drugs.com)).