PatientsLikeMe: Finding Cures for Chronic Diseases

PatientsLikeMe is an online community network where chronic disease patients are able to find other patients with similar demographics and experiences. This data is shared to help support the search toward better chronic disease treatments.

Live better, together! | PatientsLikeMe – Future of Healthcare

What is PatientsLikeMe? [1,2]

Founded in 2004, PatientsLikeMe is a free online network for chronic disease patients to connect with one another to discuss their healthcare experiences and learn from one another. With 500,000+ members, this platform aims to put the patient voice first, identifying what treatments are working, what treatments are not, and where there are opportunities for more innovation.

How does PatientsLikeMe incentivize participation and manage its crowd?

Unlike most crowdsourced platforms, PatientsLikeMe has a very specific audience focused on chronic disease patients as well as their families and caregivers. As a result, one may draw the conclusion that there is less clutter given the topic at hand. The PatientsLikeMe community helps incentivize participation by providing a space for similar patients to connect, where everyone involved derives value from the experience. PatientsLikeMe helps manage the crowd by providing an aggregate view of the patients in the network, helping users filter by age, sex, gender, treatments, symptoms, conditions, etc. Every patient has a profile to report their health conditions using both qualitative and quantitative data. Given PatientsLikeMe started as a platform focused on ALS, one challenge they face is getting a representative sample across their 1,300 health conditions.

How does PatientsLikeMe create value?

By serving as a network connecting different patients, PatientsLikeMe is able to take the information shared by chronic disease patients (including symptoms, treatments, health outcomes) and provide an aggregate view of these individual data points to reveal new insights about which treatments are working and which are not. On the platform to date, there are 38 million data points across diseases, demonstrating the value this network has created. There are significant cases where PatientsLikeMe has demonstrated its value. For example, using real time data, the platform was able to refute an ALS clinical trial [3]. The company has also partnered with the FDA to monitor drug safety [4,5]. Additionally, on an individual level, patients are able to glean through the site and community postings to find patients ‘like them’ to see if there are ways to personalize their own health decisions.

The data gathered on PatientsLikeMe is unlike most healthcare sources out there because it captures patients real-time and between visits to their doctor. This data includes treatment regimens, symptoms experienced, genetic information, etc. [6,7] It also helps tag different patient types by demographics and other such attributes. The platform’s flexibility gives patients the reins to self-report and describe their own healthcare experiences. At the same time, PatientsLikeMe acknowledges their limitations, noting their users tend to be white, female and also tend to be younger and more educated than the average patient with select chronic diseases.

How does PatientsLikeMe capture value? [8]

PatientsLikeMe has a “give data, get data” philosophy, whereby they offer their platform free of charge and also provide their aggregate data insights for free to the community. They also share de-identified patient information for a fee with companies like AstraZeneca, Takeda, and Amgen to help with research and development. PatientsLikeMe has a strong “not-just-for-profit” attitude, making it clear that they do in fact sell patient information. However, the company stresses that they only partner with organizations that are using the information to improve products and services that will ultimate flow back to PatientsLikeMe users (and not for marketing purposes).

What is PatientsLikeMe’s growth potential?

Given PatientsLikeMe has been around for over a decade, I think it is fair to say that this company is here to say. It provides clear value to its community members as well as its partners. So long as there is a need to find treatments for chronic diseases including ALS, MS, etc., this company will continue to flourish. To me, its growth potential is dependent on whether they are able to continue to:

  • Grow their user base, continuing to establish themselves as the go-to online patient community
  • Broaden their partner set, especially as they stick with the mission to only work with those who are seeking to improve the available treatment options
  • Expand into other verticals, possibly finding other avenues for revenues aside from selling patient data (eg, connecting patients with providers via a referral network, etc)

Regardless, there’s no question this crowdsourced patient platform has helped many patients in their chronic disease journeys and continues to work toward finding better treatment options.

Sources

[1] https://www.patientslikeme.com/about

[2] http://www.nytimes.com/2008/03/23/magazine/23patients-t.html

[3] https://www.patientslikeme.com/press/20110425/27-patientslikeme-social-network-refutes-published-clinical-trial-br-bri-nature-biotechnology-paper-details-breakthrough-in-real-world-outcomes-measurement-i-

[4] https://www.washingtonpost.com/news/to-your-health/wp/2015/06/15/patients-themselves-could-help-fda-flag-drug-safety-problems/

[5] https://www.bloomberg.com/news/articles/2015-06-15/fda-to-work-with-online-patient-forum-to-mine-drug-safety-data

[6] https://support.patientslikeme.com/hc/en-us/articles/202224430-What-are-the-strengths-and-limitations-of-data-on-PatientsLikeMe-

[7] http://www.cbsnews.com/news/patientslikeme-is-more-villain-than-victim-in-patient-data-scraping-scandal/

[8] https://support.patientslikeme.com/hc/en-us/articles/201245750-How-does-PatientsLikeMe-make-money-

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3 thoughts on “PatientsLikeMe: Finding Cures for Chronic Diseases

  1. Alice, ty for this post. This model and community seem to be very important – one of my best friends was diagnosed with cancer a few years ago and during that time, she relied heavily on the other women in her online support group (esp during chemo and radiation). Beyond existing work with the FDA, what kinds of complementors exist for PatientsLikeMe? For example, how could other types of partnerships help PatientsLikeMe create additional value using its 38M+ data points?

  2. Great explanation of how PatientsLikeMe works, Alice. I agree that broadening their partner set is a critical next step on their growth path. It seems like PatientsLikeMe could have a very active/responsive crowd with a pay-it-forward mentality; I imagine that many people living with a chronic disease are motivated to help others going through the same thing. I wonder if they will leverage this as an asset if they broaden their partner set. If a potential partner needed information not already in the database, PatientsLikeMe could try to activate its crowd to provide that information. This of course could pose ethical concerns, but those may be mitigated by a strong commitment to the company’s current mission.

  3. Thanks for your post! How do you see niche players tapping into patientslikeme’s value proposition by focusing on specific disease conditions? Is the platform sticky enough to retain customers?

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