PatientsLikeMe: Using the crowd to improve medical care
PatientsLikeMe is improving medical care by crowd-sourcing information from those who matter most, the patients themselves.
With a combined $4.1 billion in funding in 2014 alone, digital health companies are bringing much needed innovation to the healthcare industry. We’ve all seen how consumer companies have leveraged crowd-sourcing to help design or choose which next generation products to market based on consumer preferences, but the healthcare industry is also figuring out how to use the power of crowds to help improve medical care. One company, PatientsLikeMe, has figured out how to utilize crowd-sourcing to improve treatments for a variety of conditions by listening to the patients who actually suffer from these conditions.
Community of Sharing and Learning
Founded in 2004, PatientsLikeMe is a free online community for people suffering from any type of medical condition. Via the site, users are able to document and share their experiences, track their conditions, and communicate with others suffering from the same or similar conditions. With over 350,000 members and 2,500 conditions represented in the community, users are given a place where they can discuss their specific condition and seek comfort and support from people who understand what they are going through. However, the benefits are much greater than just the one-on-one support users find on the site.
Despite having what the company calls a “not-just-for-profit-attitude”, PatientsLikeMe is a for-profit company and, like a lot of online companies, they make money by leveraging the data their users provide. From pharmaceutical companies to research institutes, PatientsLikeMe’s data-sharing partners pay to access the real-time, personal experiences of people suffering from conditions they are currently interested in. But unlike a company that buys a user’s search history data to market them products they may or may-not need, PatientsLikeMe’s partners utilize the community’s data to further improve treatment for these conditions or develop new treatments altogether. Therefore, users of the site are incentivized to share as much information about how they feel, side-effects of any medications they are on, successful treatments they’ve tried, what they care most about, etc., because the more they share the more information these partners have to help improve their treatment options. To date, data from PatientsLikeMe’s community has been used to publish over 60 research studies and has been used to study a variety of medical products and services such as drugs, devices, equipment, and insurance.
Commitment to Transparency
Unlike a lot of online companies leveraging their users’ data, PatientsLikeMe has a strong commitment to being 100% transparent with the users of their site on what data is shared and what isn’t. The company prominently states its policy on the site, stating that “all information, besides any restricted personal information, can be shared with people within and outside the community”. Sharing users’ data is not only vital for the company, but is directly beneficial to the users of the site and by being completely transparent, users know how their data is being shared and are less likely to feel used by the community. In addition, the company does not sell any data for marketing purposes without explicit consent from users. Overall, the company transparency creates a community based on trust and alignment on a single goal, improving the lives of the people suffering from these conditions.
The Road Ahead
One of the greatest challenges the company faces today is the ability to continue to grow its community and continue to collect a volume of data that’s beneficial to their data-sharing partners. The patients who are most likely to contribute to a community like PatientsLikeMe are ones who suffer from their condition on a frequent basis and who are constantly seeking better treatments and support. Patient populations for these types of conditions are usually fairly small and this is apparent in the relatively small community size of less than half a million users (for comparison, Snapchat has close to 200M users). Despite this concern, PatientsLikeMe is a company that should be around for many years to come. The information being shared on the site is data that is best captured from the patients themselves (a lot of qualitative data can be lost in translation from patients to doctors). As long as medical companies are seeking ways to improve treatments of the conditions discussed on the site, they will be interested in hearing what these patient populations have to say. What’s good for the patients is good for the data-sharing partners and it’s this unique relationship that allows a company built on crowd-sourcing patient experiences to be successful.
Student comments on PatientsLikeMe: Using the crowd to improve medical care
This is a really interesting point. I think you are spot on that getting a range of individuals on the site with different and varied conditions is key for the future of the site. However in the short term it might be best to be specialized, i.e./ be focused on patients suffering from a specific type pf condition. This will ensure the richness of the information is there, and overtime can expand to other conditions.
I think the type of content on this needs to be varied too, to be of use to the patients and encouraging constant use and updates. For example, beyond just symptoms, for example different recipes they tried to cook that was easy to eat if they were having problems swallowing etc. The site needs to be current and continue to be as useful to patients as it is to the people buying the data.
Totally agree that PLM should build a critical mass of patients in specific disease states to capture meaningful volumes of data. It’s great that they’ve by and large overcome the barrier of getting patients to share personal health information with a broader community, but I wonder if there are any liability issues created with patients giving one another medical advice. Although they may be knowledgable, patients typically aren’t medical professionals and obviously what works for one patient may not necessarily work for another. That said, an exciting game changer for this company could be acquiring lots of genetic and genomic data on patients and running more sophisticated analytics with that information in the future as well!