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Our mission

PatientsLikeMe's mission is to improve the lives of patients through new knowledge derived from shared real-world experience and outcomes.


Our story

PatientsLikeMe started with one patient, and one family's experience with a life-changing condition. When Stephen Heywood was diagnosed with ALS in 1998 at the age of 29, his brothers Jamie and Ben got to work, trying anything they could to slow Stephen's disease progression. They became citizen scientists, harnessing the power of any and all information they could find. It was a trial and error approach, something was missing, and they knew there had to be a better way. What couldn't they find? The aggregated real-world experiences of others living with and fighting to survive ALS.

So, along with family friend Jeff Cole, they launched PatientsLikeMe to connect ALS patients. But it quickly expanded, and since 2011, we have been welcoming any person living with any condition to connect with others, learn and take control of their health.

Today, PatientsLikeMe is the world’s largest integrated community, health management, and real-world data platform. Through PatientsLikeMe, a growing community of more than 830,000 people with over 2,900 conditions share personal stories and information about their health, symptoms, and treatments, with a goal to improve the lives of all patients through knowledge derived from shared real-world experiences and outcomes. Data generated by patients themselves are systemically collected and quantified while also providing an environment for peer support and learning. These data capture the complex temporality and competing influences of different lifestyle choices, socio-demographics, conditions, and treatments on a person’s health. Everything members share empowers the community with personal agency, establishing PLM as a clinically robust resource with demonstrated impact, including more than 100 studies in peer-reviewed medical and scientific journals.

In 2016, honoring the trust our members have placed in us, PatientsLikeMe began connecting patient-reported information with biological data to find new clues about what makes us sick or healthy, and what it means to thrive. With an investment by iCarbonX in 2017 we were able to accelerate this work through our DigitalMe Ignite study.

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Jamie, Ben and Stephen Heywood

In 2019, PatientsLikeMe became part of UnitedHealth Group’s Research and Development unit to continue our patient-centric mission. By using insights and stories told by patient-generated data, we were able to further democratize learning, so people could better understand how their medical, behavioral and environmental factors may advance or mitigate disease and optimize health.

In 2020, PatientsLikeMe began to operate as an independent company backed by Optum Ventures, a UnitedHealth Group affiliate. By joining Optum Venture's innovative portfolio of healthcare companies, we are positioned to continue to advance knowledge about health and disease as trusted custodians of our members' most valued health information.

Through continued advancements in our learning health network, and by connecting with a community of people like them, patients can discover new paths forward to improve their health today, and in the future.


Living better starts here

On PatientsLikeMe, no one is alone. No matter where you are on your health journey, you’ll find a safe place to ask questions, find answers from others who have gone before you, and thrive in a community of people who are helping each other live their best every day. PatientsLikeMe members...

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Get answers

Learn how others manage their symptoms and discover treatments that might work for you.

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Take charge

Use smart tracking tools to better understand your health and feel empowered to make informed decisions.

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Heal together

Share your health experience to help the next person diagnosed and take part in research that will create a brighter future for all.


Our core values

Patients first

Our members trust us with their most valued health information. We honor that trust, and we’re dedicated to using this information to advance knowledge about health and disease so we can deliver new insights to our community.

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Openness

We believe that sharing health information is a good thing. When patients share their experiences, we can bring real patient perspectives to the healthcare industry and drive necessary change. Read more in our Openness Philosophy.

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Transparency

No surprises. We disclose what we do with members' information, how we make money and who we partner with.

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“I researched other people who have gone through the clinical trials I was going to be doing, and I was able to make an informed decision… You feel less alone on the site, like you’re not the only one going through this.” - Laura, living with IPF