PatientsLikeMe – Crowdsourcing patient platform for healthcare

Crowdsourcing platform empowers patients to take a greater role in advancing health


Patients Like Me & the Digital Health Landscape

Forbes calls it the “Fourth Industrial Revolution”– the concept that technology is being integrated not only in our physical but also our biological lives as in healthcare. [1]

Named Forbes’ Top 10 most innovative companies, PatientsLikeMe, a patient crowdsourcing platform is a leading revolutionary in the digital health world [2].  Founded in 2005, this company was the first-mover in unlocking the potential of utilizing an online patient community to empower the patients to be a larger influencing force in the healthcare landscape.

Business Model

Value Creation

PatientsLikeMe was able to create value first with a single-side platform strategy – creating a robust patient community motivated to learn more about their individual diseases and treatment, track health and connect with other patients. PatientsLikeMe was then able to take the success of their online community and create a two-sided platform by partnering with healthcare stakeholders who could use data from the community to reach patients and better understand patient health and treatment.

Patients Like Me’s Open Research Exchange Platform


ALS + Parkinson’s Disease research study in partnership with Denali Therapeutics

PatientsLikeMe continues to foster a sustainable and active patient community through initiatives like its open-participation research exchange platform that allows researchers to tap into a network of over 500,000 patient members across over 2,700 conditions to design, test and conduct surveys and research studies. [3] By leveraging it’s breadth of patient members on it’s platform, PatientsLikeMe has published more than 100 research studies and collaborated with healthcare stakeholders across payer, provider, government, non-profit, and biopharma. In 2016 alone, PatientsLikeMe has partnered with multiple healthcare stakeholders including in 2016 to better understand impact of prescription medications on patients and Duke to conduct the first ever virtual clinical trial launch to better assess benefits of a new ALS drug Lunasin. [4]

Value Capture

PatientsLikeMe’s platform for patients to donate data

PatientsLikeMe is free to patients using the platform but charges companies to have access to the crowdsourcing service’s treasure trove of patient data and diverse patient community. As part of an open data exchange the company has also launched “Data for Good” which allows patients to voluntarily sign up to donate their data for research. [5]

Companies like PatientsLikeMe are transforming a traditionally siloed, competitive clinical research world into a more open system to share data. PatientsLikeMe, through its iCarbonX partnership just this year is now part of a Digital Life Alliance of digital health companies collaborating to share relevant health data. [6]

Crowdsourcing Benefits

Benefits of crowdsourcing studies initiated by Patients Like Me are also most beneficial to providing real world outcome data beyond the rigid conditions of a clinical trial. Stakeholders such as biopharma and hospitals can utilize Patients Like Me patient data to also reduce cost in clinical trial recruitment and increase clinical trial enrollment through digital trials – a valuable proposition for many conditions such as cancer – where currently only 5% of cancer patients currently enroll in cancer trials[7]

It is easy to build a technology platform but more difficult to create a community.  In this case, what makes Patients Like Me’s platform sticky has less to do with the UI and more to do with the large  “pull” factor to draw in patients and their families who want a greater community for research and emotional support, sustained facilitating of interaction and the matching of patients to relevant insights to healthcare stakeholders.

Potential Challenges

While crowdsourcing does provide a larger and more attractive data set, potentially unreliable or inconsistent data could to be a potential hurdle to integration of crowdsourcing data with established clinical research trials. Lack of industry standards around clinical crowdsourcing as well as privacy issues around shared information could be continual challenges. [7]

PatientsLikeMe has an advantage over late entrants who have not amassed a half million users on its platform although many players have taken on a  more micromarket strategy such as Amino, focused on doctors or 23andMe focused on genomics data. This niche play could potentially upend PatientsLikeMe like the disaggregation of Craiglist into micromarket who do a better job of meeting specific needs of patients. I would also be wary of traditional incumbent technology players like Apple who have the benefit of a in-depth user and activity data or electronic medical record companies like Epic with access to historical clinical records.

What’s Next for Patients like Me

While Patients Like Me is unlikely to supplant established healthcare entities such as biopharma or providers, what it does provide is a complementary service to better understand patient experience, human disease in ways that existing stakeholders can leverage to better improve care across the continuum.



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Student comments on PatientsLikeMe – Crowdsourcing patient platform for healthcare

  1. Super interesting post! Has Patients Like Me or any similar platform concerned about a lawsuit for unreliable information? How do they protect?

  2. Thanks for the post, very interesting and relevant.

    You mention how PatientsLikeMe is transforming a traditionally siloed, competitive clinical research world into a more open system to share data. I’d be curious to know how the data collection works in practice, given the highly regulated market and often inability of patients themselves to get access to their medical records (ie hence the movements like OpenNotes that try to make the data more readily available and comparable).

    Oftentimes, timely collection of medical data could provide powerful insights and basis for research – with a (more) uniform data collection systems across hospitals and medical centers (unfortunately not the case in US now) and access to that data, companies like PatientsLikeMe could use the power of crowdsourcing even more and contribute not only to advancements in medical research but also better treatments for patients.

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