Evidence from Patients Like Me
What is evidence? I ask myself this question fairly often since I work in innovation. In trying to generate disruptive and transformative ideas, it is important to understand what has been "established", and why. The next question is: should it change? If so, how?
In Medicine, evidence often comes in the form of an article published in a peer-reviewed journal; hopefully the research demonstrates the principles of scientific rigor. In Law, evidence must conform to a number of rules and regulations in order to be admissible in court. In short: established disciplines try to ensure that decisions and future actions are based on good information, and thus create standards for how that information is captured and how it should be used.
This is a good thing. Not just anything should be considered "high quality" - if that were the case, we might see McDonald's publishing studies on the health merits of Happy Meals and McNuggets.
Unfortunately, though, the path to high quality information - or in other words, evidence - is resource-intensive and time-consuming, and requires expertise that only resides in a certain subset of the population. This rigorous process - as important as it is - no doubt excludes more than just "bad information". It can also exclude new types of information, which may be useful but which don't fit established standards for "evidence".
Case in point: A recent article in Technology Review discusses how the patient social-networking site PatientsLikeMe came to the conclusion that lithium did not slow the course of ALS. Eighteen months later, the journal Lancet Neurology published a study with the same conclusion. I think it is likely that many researchers did not take the conclusion seriously - or even know about it - until it was published in the Lancet.
This bears the question: what types of information (potential evidence) are being overlooked in patient social networking sites, and should Medicine be paying more attention? I could imagine, for instance, that a community of patients could identify chief complaints associated with diseases that are currently not in the published research literature. This could improve diagnosis. Patients could also identify previously unknown drug contraindications, just by describing their experiences with other patients.
Now, I'm not suggesting that we take information from patient communities and immediately consider it evidence, but shouldn't we consider its potential utility and find a way to apply it appropriately? I envision a physician-patient interaction going like so:
Mrs. Smith: Doctor, I was wondering if Fakeprofin might help my symptoms.
Doctor: Well, Mrs. Smith, Fakeprofin does address the symptoms you describe, but I want to make sure it is okay to take with your other medications. Let me see here....(type type type)...Hmmm...There are no clinical trial findings available yet. However, it looks like patients similar to you on PatientsLikeMe have had no issues and have had favorable experiences, so let's give it a cautious try. I want you to follow-up with me in 2 weeks or sooner if you experience any of these problems....
Okay, I'll stop rambling now - but hopefully you get the idea!
Health 2.0 Europe or why I finally ventured away from North America
More than 500 attendees representing 15+ countries assembled at this week's conference to hear from leaders in online health from the Denmark, Germany, Hungary, the UK, the US, and many more. We heard about initiatives that connect patients to physicians or to each other and use technology to integrate patients into health care systems. We also learned about new self-care tools for patients and search engines or integrated platforms that provide content to patients and physicians.
After three years of conferences in the United States, the beautiful city of Paris was host to Health 2.0 for its European debut. It was quite a success, and quite a new scouting experience for me. As a volunteer, throughout this conference, I had a great look at the "behind the scenes" work that goes on. Working on the speaker management team also facilitated networking.
Matthew Holt moderated the first session around search and content which consisted of 3.5 minute demos from Orphanet, MedWord, Health on the Net Foundation, Healthline Networks, Organized Wisdom, and Webicina. The second session around patients and online communities was moderated by Indu Subaiya, and also included great demos from Pagine Mediche.it, ACOR, PatientsLikeMe, iWantGreatCare, imedo. This session also included commentary by Alexander Schachinger from Humbolt University Berlin and Susannah Fox from Pew Internet Project. The final session on Day 1 was moderated by Denise Silber and included demos of Sermo, Medting Doctors.net.uk, doc2doc, Neurosurgic, and Sante Log.
...to be continued