{"id":4260,"date":"2017-03-09T19:49:34","date_gmt":"2017-03-10T00:49:34","guid":{"rendered":"https:\/\/digital.hbs.edu\/platform-digit\/submission\/patientslikeme-find-cures-for-chronic-diseases\/"},"modified":"2017-03-09T19:49:34","modified_gmt":"2017-03-10T00:49:34","slug":"patientslikeme-finding-cures-for-chronic-diseases","status":"publish","type":"hck-submission","link":"https:\/\/d3.harvard.edu\/platform-digit\/submission\/patientslikeme-finding-cures-for-chronic-diseases\/","title":{"rendered":"PatientsLikeMe: Finding Cures for Chronic Diseases"},"content":{"rendered":"

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Live better, together! | PatientsLikeMe – Future of Healthcare<\/a><\/p>\n

What is PatientsLikeMe?<\/strong> [1,2]<\/p>\n

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,\u00a0what treatments are not, and where there are opportunities for more innovation.<\/p>\n

How does PatientsLikeMe incentivize participation and manage its\u00a0crowd?\"\"<\/a>
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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.\u00a0Every patient has a profile to report their health conditions\u00a0using 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.<\/p>\n

How does PatientsLikeMe create value?\"\"<\/a><\/strong><\/p>\n

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\u00a0treatments 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\u00a0value. 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.<\/p>\n

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\u00a0flexibility gives\u00a0patients 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.<\/p>\n

How does PatientsLikeMe capture\u00a0value?<\/strong> [8]\"\"<\/a><\/p>\n

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\u00a0also share de-identified patient information\u00a0for a fee with companies like AstraZeneca, Takeda, and Amgen to help with research and development.\u00a0PatientsLikeMe has a strong “not-just-for-profit” attitude, making it clear that they do in fact sell patient information. However,\u00a0the 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).<\/p>\n

What is PatientsLikeMe’s growth potential?<\/strong><\/p>\n

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:<\/p>\n