One of my key learnings about PatientsLikeMe was that it is indeed a hub for patient collaboration. It was a pure pleasure to have an opportunity to interview Sally Okun of PatientsLikeMe; an organization I have respected for a number of years.
In this post, I share the 5 key areas of collaboration that came out of the Rise Of The Patient interview with Sally. I would also like to thank Sally for her editorial review of the content.
The 5 Spokes of Patient-Centered Collaboration At PatientsLikeMe:
1. Patient Health Care Self-Management and Collaboration
The PatientsLikeMe Community truly exemplifies patient health care self-management and collaboration. PatientsLikeMe is a social network community where patients can truly learn from each other and become better equipped to manage their health challenges. To-date, there are over 160,000 registered users on the site. At PatientsLikeMe, patients come together to share their stories and their experience. Patients create a profile as it relates to their condition, medical history and condition(s). Once a profile is completed by the patient, he/she can then access a variety of built-in tools to monitor their conditions, symptoms, treatments and other experiences. All profiles on the site are viewable within the site. Using a search and filter tool, patients can find patient profiles that are similar to theirs and engage in conversation with patients like themselves. Patients also have the option of making their data public to anyone on the Internet. About one third choose to make their profile public. There are approximately 1500 disease conditions registered on the site. For a number of patients, the site has meant they are able to talk to others, with the same disease, for the very first time. It is this first step that leads to a journey of peer-to-peer, patient collaboration.
2. Data Driven Patient Collaboration
The PatientsLikeMe community is very grounded in the ability to gather individual patient data. They are able to display patient data in meaningful charts and graphs and share this collective wisdom across the community. Patients can use this information to better manage their health and communicate their status with their health care practitioners. This not only facilitates communications with their health care provider(s), but also improves the collaboration in managing their health condition.
3. Research Patient-Centered Collaboration
In the PatientslikeMe model, the patient is the reporter of the data. As a result, the data is in the patient’s language. PatientsLikeMe administrators code the patient data into clinical terms thereby developing a patient vocabulary and thesaurus The aggregated data is sorted by disease, symptoms and other health-related experiences. All personal identifications are removed from these aggregated data.
PatientsLikeMe partners with industry, clinical and academic researchers who want to learn first-hand how patients live with and manage their conditions in the real world. PatientsLikeMe works with a diverse stakeholder-base, interested in patient-centered collaborations. This includes government agencies, clinicians and industry leaders who are expanding their research initiatives to better understand what matters to patients as it relates to their drug, medical treatment and disease state.
4. Adverse Event Reporting
PatientsLikeMe created a drug safety platform capable of monitoring for adverse events attributed by patients on the site to medications and medical products. This platform is available when working with industry partners to support their regulatory responsibilities for adverse event reporting.
5. Patient-Centered Outcome Research institutes [PCORI]
PatientsLikeMe has been very supportive of the work of PCORI, an exciting initiative that is reaching out to patients and health care consumers to participate in all phases of the research process. Patients are encouraged to be part of the design of a research proposal, to submit research questions that are meaningful to them and to be active participants in funded research projects. PCORI is a very new and exciting initiative that is part of the U.S. Affordable Care Act. PCORI is taking health care consumer and patient collaboration to another level.
PatientsLikeMe has made major steps in developing a patients-centered approach to both health care self-management and research. I would encourage that you listen to the interview below. So many pearls were shared. Let me know what you think.
Again, a big thank you to Sally Okun for being a guest on my Rise Of The Patient (#ROTPt) series and her contribution to this post.