The idea was for patients to share their stories and guidance with each other in the hopes of providing emotional support, care guidance, and generating hypotheses about effective treatment and care practices. The following interview was conducted with Sally Okun, who serves as Vice President, Advocacy, Policy & Patient Safety at PatientsLikeMe.
What is PatientsLikeMe? How is it different from the way patients gather information, communicate, and interact now?
PatientsLikeMe is a health information-sharing website for patients. It’s the only place online where people can share both personal stories and health data about their condition to help uncover great ideas and new knowledge. Patients can learn from each other and find answers to their questions about treatments, symptoms, and much more. By sharing health data on our site, they’re also collaborating in real time with researchers and companies to improve the understanding of their disease and accelerate the development of new treatments. It’s the kind of information sharing — or crowdsourcing — that can affect the lives of every patient and transform healthcare by putting patients at the center of the healthcare system.
How can a patient expect to benefit from joining PatientsLikeMe?
We have more than 350,000 members sharing their experiences living with more than 2,500 conditions. That makes us one of the biggest and busiest patient networks online. Our members report that the site ultimately helps them live better day to day because they can see exactly how they’re doing, connect with others for information and support, and contribute to research in their condition.
What diseases/conditions currently exist in the platform?
More than 2,500! We started ten years ago, focusing on chronic diseases and, specifically, neurodegenerative diseases. We spent the first few years building a platform that translated and improved the measures used in diseases like Amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), and Parkinson’s. We wanted to bring what we knew worked well to as many patient populations as possible and opened the site in 2011 to anyone with any disease. Today, our largest communities are in well-known conditions like fibromyalgia (with 60,000 members) and MS (with 40,000 members). But we have many members who are living with a range of rare diseases including Alkaptonuria (AKU), Idiopathic Pulmonary Fibrosis (IPF), and Mycosis Fungoides-type Cutaneous T-Cell Lymphoma (MF-CTCL).
Does the platform have any skin diseases/conditions?
Absolutely. Psoriasis, eczema, and rosacea are all well represented on PatientsLikeMe, as are various forms of melanoma. We have also recently added a number of cutaneous t-cell lymphoma patients.
• Does there have to be a pemphigus or pemphigoid section of the platform in order for pemphigus/pemphigoid patients to participate?
Any patient with any condition can sign up on PatientsLikeMe. While we’re not trying to add every single condition known, we do have a wide range of conditions represented. This reflects our practice to listen to members and add specific conditions if they are needed but not yet listed. While the platform is open to all patients, and we enable any group of patients to self-organize and combine their individual voices, we also pre-populate the site at times. We did this in 2011 when we were opening it up to all conditions and added about 300 conditions. There are currently about 20 patients who report having pemphigus on PatientsLikeMe.
• How do you decide what diseases you will add to the platform?
We don’t, our members do. Any patient with any condition can join PatientsLikeMe. There are some communities on the site that are more developed than others, and these sometimes involve customizations to specific areas of the platform to support unique aspects of a particular disease.
• Can physicians utilize this platform, or is it only for use by patients?
We’re a platform for patients, but members can download the information in their profile to share with their doctors. And of course, doctors can be patients too, and can use the site for their personal health and self-care management.
• How do you curate or control the quality of the information that patients share? What if someone writes something that is not quite correct, or someone walks away with an unintended interpretation?
We have a team of clinicians who regularly review new information coming in about new diseases or medications. If they see something incorrect, they’ll work with members to make sure they know how to add information accurately. And we regularly reassess to see if we can organize things differently to better capture information, and make modifications all the time. We also have a Community Team that moderates and regularly engages with patients in the forum. This team often provides support to members on how to best use the site for sharing information. It is important to note that we are not a medical site and do not provide medical advice.
• Is the information a patient submits to the PatientsLikeMe platform public or private?
Members are welcome to share as much or as little information as they’re comfortable with on PatientsLikeMe. Some members set up their profiles to be public. That means that the information they share, including their user name, profile photo, demographic information including age, gender, location, and bio information in the “About Me” section is public, as are their reports on symptoms, treatments, and weight. For members who do not make their profiles public, their information is only visible to other members.
• Does PatientsLikeMe sell any of the information patients contribute to the platform?
PatientsLikeMe is a research-based platform built within a social network that is freely available to patients. Our ultimate goal is to transform healthcare by including patient-generated data in the discovery and development process and to support outcomes that matter most to patients. To that end, the data that patients share about their conditions, symptoms and treatments in their profiles are de-identified and aggregated and shared with our partners to answer important questions of interest and help them develop better drugs, devices, equipment, insurance, and medical services. Revenue to support our work and the website comes from various sources including the pharmaceutical and biotechnology industry, academic and clinical research grants, and philanthropic organizations such as the Robert Wood Johnson Foundation (RWJF). We believe in transparency, and we tell our members exactly what we do (or do not do) with their data.
• Is there any cost to join?
Nope. It’s free!
• How does the PatientsLikeMe approach add to what the clinical and research communities do?
While clinical and research communities have contributed significantly to the medical literature, they often do not have a systematic way of engaging healthcare’s ultimate stakeholder — patients — in their own care. PatientsLikeMe is a scientifically oriented platform that enables patients to lend their voice to research. Together with our members, we have contributed to over 60 publications, many in prestigious peer-reviewed medical journals.
• How have findings from the platform helped efforts to research and develop new insights?
We have collaborated across a wide range of stakeholders in the healthcare space on research studies. We have published results from these studies in respected journals via open access so that the findings that be shared broadly. These findings enable patients to lend their voice to medical research. One example is our patient-initiated lithium carbonate study. Following the publication of a small Italian study that provocatively suggested the drug lithium could slow ALS, hundreds of patients started taking the drug. Using our innovative data collection system and matching algorithm, we refuted this study with a sample ten times larger than the original trial. You can find a link to this and all our publications in our comprehensive bibliography here.
• Is there a particular number of patients or amount of input needed to meaningfully help R&D efforts?
This really depends on the question and the condition. Typically, our research team works with our research partners and patients to understand the questions to be answered, how to best measure them in a patient-centric way, and then we jointly develop targets for the number of patients that need to participate or the amount of information that each member needs to contribute in order to draw meaningful conclusions.
• Do you work with disease foundations and patient advocacy organizations? What type of work do you do with them?
We’ve worked with a broad range of nonprofits and advocacy groups. Here’s a list of some of them: https://www.patientslikeme.com/about/partners. The specific nature of our collaboration varies: from serving as a non-profit’s infrastructure for enrolling and managing their member communications all the way to collaborating on research. It really depends on the specific condition and the specific nonprofit.
• How do you see the IPPF potentially working with PatientsLikeMe?
There are several ways to work together. Like our other rare diseases communities, we welcome patients to sign up, track their progress, connect with others, and contribute their information in a central place so that others can learn from their experiences.
• How can readers learn more about PatientsLikeMe?
The best way to learn about PatientsLikeMe is to visit our website at patientslikeme.com where you can explore information about on our public Community pages. You can view the profiles of members who opt to make their profiles public and see how health data is displayed in useful charts and graphs. Another great source of information is our News page http://news.patientslikeme.com/
<byline> Badri Rengarajan, MD, is the former President of the IPPF Board of Directors and resides in northern California.</byline>