What kind of research do you do and how do I get involved?

What kind of research do you do?

• Our research depends on answers from other patients like you, so the questions we are best at answering are ones that patients can help us answer directly. This includes surveys, developing patient-reported outcome (PRO) surveys, polls, multi-step surveys, and projects using other sources of data such as wearables. We can also do research on the data patients enter into their profiles over time (longitudinal studies).
• Our research can be funded in different ways - client (commercial), grant-funded, or internal research projects. Client work is typically with pharmaceutical companies and involves using our existing data as well as collecting new data through surveys to help clients make decisions and learn more about conditions experienced by our patients. A typical study might involve looking at the impact of a particular symptom (e.g., insomnia) in a given population (e.g., Parkinson’s disease). Grant-funded work takes place with collaborators at universities and academic medical centers who have written us into a grant as a subcontractor to collaborate in studies, sitting on advisory or steering committees, analyzing our databases, or conducting surveys. Internally, our team may choose to conduct their own research based on patient interests, personal interests, or with a view to improving and expanding the site.

How can I participate in research at PatientsLikeMe?

Being a member and updating your profile with symptom and treatment data is a simple way to contribute to the research constantly going on at PatientsLikeMe. Occasionally, we invite members to complete surveys about different topics related to a condition, symptom, or treatment. If your profile information tells us that you have a condition, symptom, or treatment that is part of a study, and you have been active on the site recently, you may get an invitation to a survey through the PatientsLikeMe private message system. Sometimes we also look for patients for other research opportunities and will reach out to people with the Research interest tag or who have been active in our Research Forum.

I have a research idea. Where do I talk about it?

That’s what our Research Forum is for! If you have a research idea please tell us more: What condition are you interested in? What is your research question (what is it that you want answered)? How can patients like yourself help answer that question? Remember, our research depends on answers from other patients like you, so the questions we are best at answering are ones that patients can help us answer directly.