The internet allows us to share pictures, music, blog posts, and medical information with hundreds of people we know and even more people we don’t. Sharing private information in the cloud comes with obvious risks, but it can also offer many benefits, some of which are just now coming to fruition.
PatientsLikeMe, an online community founded in 2004, which allows patients to manage their conditions and connect with others who share similar experiences, is taking this concept a step further. According to a PatientsLikeMe press release, the company has “been awarded a $1.9 million grant from the Robert Wood Johnson Foundation (RWJF) to create the world's first open-participation research platform for the development of patient-centered health outcome measures.”
“Over the years, we've seen a number of websites that provide patients with forums for social support or innovative technologies that help capture some aspect of a patient's experience with their disease,” said Ben Heywood, co-founder and president of PatientsLikeMe, in an interview with Healthline. “We've yet to see anyone change the way patients can contribute to the measurement of disease. That’s the road we're on, and we believe PatientsLikeMe is the only one of its kind on it.”
The Advantage of Data Sharing
Ordinarily, health outcome measures are developed by clinicians and researchers. However, this new platform presents a unique approach to healthcare, allowing researchers, clinicians, academics, and patients to develop outcome measures in real-time, said Heywood.
Patients will use standardized questionnaires and at-home diagnostic tests to track the progression of their illnesses, and they can then share that data with researchers. If successful, this approach could accelerate the advancement of medicine by aligning research with patient needs and demonstrated successes.
“In this collaborative environment, researchers will be able to develop a health outcome measurement that has been reviewed and critiqued by their peers,” Heywood said. “The outcomes scores will then be tested amongst patients who are already contributing to research through their participation on PatientsLikeMe.”
According to their press release, PatientsLikeMe already consists of “nearly 200,000 patients, representing more than 1,500 diseases, [who] have created longitudinal records centered around their health outcomes.” While the new RWJF-funded platform will function separately from their existing social media arm, Heywood said he hopes to attract patients who already use PatientsLikeMe to inform research on the new platform.
Privacy and the Risk of Sharing
“There is always a risk when sharing information online,” said Heywood, who pointed out that the new platform will adhere to the same privacy philosophy described on the PatientsLikeMe website.
The site openly acknowledges the risks of sharing medical information online, stating that “medical and life insurance companies have clauses that exclude pre-existing conditions, and employers may not want to employ someone with a high-cost or high-risk disease.” However, the company also believes in the value of openness and encourages “people to share only what they're comfortable sharing,” Heywood said.
“Our members support this because they understand they are contributing to science in new and important ways,” he added. “We also transparently tell them what we're doing and how we're doing it, so they can weigh the risks and rewards of sharing on a site like PatientsLikeMe.”
Heywood also said that while “the primary purpose of the site is to allow patients to share this kind of data,” member privacy is managed both by the patients themselves—who can choose to remain anonymous—and by PatientsLikeMe, which de-identifies the structured health data before sharing it with their partners. These partners are also contractually obligated not to re-identify this data.
Forums of the Future
This "open science" approach sheds new light on how powerful the simple act of social sharing can be. And while putting personal information on the web will always put the privacy of the individual at risk in some way, the data may play a valuable role in future scientific research and patient care.
“Measurement is the basis of knowledge. For too long, there have been restrictions placed by copyright and weak and out-of-date tools to measure a patient’s experience with disease,” said Heywood. “Patients, researchers, and clinicians working together to iterate and learn about the holistic journey of each condition and health itself is a critical step toward transforming care and discovery so that they truly serve the patient.”