The pharmaceutical and medical device industries are not on the leading edge of social media. While this may be changing, the really good communities aren't being created by drug and device companies.
One example is EsTuDiabetes. Created by the non-profit Diabetes Hands Foundation, EsTuDiabetes recently won "Best Patient Community" in the Healthcare Engagement Strategy Awards 2010.
Another example is PatientsLikeMe (PLM), which helps people communicate and support each other while living with the disease. PLM's 65,000 members record their symptoms and match them with the medication they're taking, across 16 disease categories. Not only does this allow people to track what they've done, the site can help compare people's experiences.
This is where PatientsLikeMe has a shot at redefining medicine - and clinical research.
Imagine going to a doctor who doesn't have a cure for your disease. She may try different medications, at different doses, to help alleviate your symptoms. While trying to help, in these situations doctors are essentially throwing darts - they just don't know the best course of action.
What PLM does is to help find what's working best for everyone in the community, thereby treating the group's experience as real research data.
"Real" may be overstating it a bit though. The data is limited by the people who are contributing, by the lack of control groups, and by any sense of the completeness of patients' contributions. A couple of years ago, The New York Times excellent article Practicing Patients labeled PLM participants as "beta testers".
So, while there are clear opportunities for improved access to treatment options, there are also clear risks. No two patients are alike, and no two patients have truly identical diseases. A recent discussion on inVentiv Health's blog highlighted some of the risks and wonders how all of this impacts doctor-patient relationships.
To take it one step further: How will drug and device companies be impacted by this trend? Will they bristle at candid online discussions about side effects associated with their products? Or will they embrace social networks like PLM as a source of adverse event information?
(On this last point, check out slide 25 of "The Real Social Media Question", which was put together by Alex Butler, a communications manager at J&J's Janssen Cilag.)
And that's where things get even more exciting. Drug and device companies have huge infrastructures and investments in clinical research and safety reporting. Are they ready to up-end, or at least amend, those practices? Are they ready to listen?
Because listen, they should. MIT's Technology Review drove that point home in its most recent issue. Patients' Social Network Predicts Drug Outcomes shows that PLM had come to the same conclusion as a ALS-focused clinical study, except 18 months earlier and for a fraction of the cost.
The article goes on to say that PLM won't replace clinical trials just yet but can expand the patient population that can "have a say" on might not be eligible to participate in a clinical study.
The global nature of PLM also raises a translation question: Currently most members are English-speaking [PDF link] but that is sure to change. How will the PLM community and industry deal with foreign-language content or contributions written in broken or incorrect English?
This is a high-stakes undertaking, for patients, for PLM, for drug and device companies, for clinical research organizations, and also for translators. It will be interesting to see how it develops.
For more information, take a look at these related articles:
- Pharma blogs - doomed if you do, doomed if you don't
- Social media and the translation business, revisited
- Global clinical research - unethical or business necessity?
- Medtronic wants to be your friend
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Categories: clinical research