Technology has enabled innovative collaboration on many fronts, not the least of which is health, of course. An exciting example of the possibilities of such collaboration can be found in the Open Research Exchange (ORE) initiative, sponsored by PatientsLikeMe and the Robert Wood Johnson Foundation. The objective of this initiative is to create an open forum between researchers and patients, to better enable them to come up with health outcomes measurement tools that reflect both the researchers’ needs for information as well as the actual experiences of real patients. This project is a natural extension of PatientsLikeMe, which offers patients with thorny conditions such as ALS or lupus a platform to exchange information with others about their symptoms, test results, treatment and other experiences. In contrast with the customary focus on security and confidentiality regarding personal medical information, PatientsLikeMe promotes an “Openness Philosophy” that encourages sharing such information, (while respecting the privacy of users through the ability to post without revealing one’s full identity or contact information). This important data from over 200,000 contributors, is also shared with PatientsLikeMe partner entities such as the National Psoriasis Foundation, Penn State University and Merck Inc. Through the feedback from patients in PatientsLikeMe, these agencies are better able to understand the patients’ perspectives, thereby allowing them to advance research on treatments to improve care.
The Open Research Exchange takes the next step toward active collaboration between researchers and patients with this initial focus on development of health outcomes measurement tools. Using this open forum environment, researchers, clinicians and patients can collaborate in real time to improve measurement instruments. Then the instruments can be tested with PatientsLikeMe members who choose to participate. The measurement instruments created and validated using this open platform software will be made available at no cost via the ORE web site.
ORE is currently in pilot stage, with four pilot researchers from UC San Diego, Villanova University and Fresenius Medical Care, ABIM and the METHODS research team (Paris) on board. However, ORE is still recruiting researchers throughout the 2013 pilot phase of the project. For more information, go to http://openresearchexchange.com/.