What is ORE, and what will it do?
Health outcome measures are typically developed by clinicians and researchers, and collect information that meet their needs. PatientsLikeMe’s Open Research Exchange (ORE) seeks to change all that by creating an open platform for developing, validating and sharing health outcome measures that better reflect patients’ experiences with a disease, and assess health and quality of life in ways that matter to patients.
How does this differ from what PatientsLikeMe is already doing?
For years, members of PatientsLikeMe have been contributing directly to research through data-sharing to advance understanding of the disease in a way that can accelerate discovery and improve care. This opportunity takes all of those contributions and expands them well beyond what’s imaginable. ORE is the hub where we can work together to develop new health outcome measures and increase our collective understanding of disease – faster than ever before.
Will the measurements really be free and openly shared?
We intend to always allow researchers free use of the platform to develop their health outcomes. The instruments themselves, as well as data indicating their validity and performance, will be publicly available on our website. Measures developed on the platform will be licensed under terms that allow others to use and extend them at no cost.
How else are patients helping to inform research?
In 2014, PatientsLikeMe formed its first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients. As part of their mission, the Team of Advisors developed the ‘Best Practices Guide for Researchers’, a written guide outlining steps for how researchers can meaningfully partner with patients.
Who were the first researchers to use the platform?
The first four pilot researchers were:
- Gerald Arnold, PhD, MPH and Rebecca Baranowski M. Ed., MS, American Board of Internal Medicine (ABIM)
- Tamara Kear PhD, RN, CNS, CNN of Villanova University and Fresenius Medical Care
- William Polonsky, PhD, CDE of the Behavioral Diabetes Institute
- Dr. Phillippe Ravaud, MD, MSc, PhD and Dr. Thi Tranviet, MD and PhD candidate, of the METHODS Research Team in Paris
See more information about the researchers who are using the Open Research Exchange here.
How will access to the PatientsLikeMe network work?
PatientsLikeMe currently allows ORE researchers to access our patient populations to test and validate their health outcome measurements. Since we don’t yet know the volume and quality of outcomes that we may want to test with patients, we can’t promise unlimited or free access forever. In order to preserve the patient experience, we’ll likely need to have costs associated with access to our patient populations to validate a new health outcome measurement.
How will the information generated be made available to researchers?
A primary objective of this new platform is to facilitate constant improvement of health outcome measures. Those who develop measures on it will have access to platform software for free. Additionally, the measures developed on the platform will be licensed under terms that allow others to use and extend them at no cost. The instruments themselves, as well as data indicating their validity and performance, will be publicly available via PatientsLikeMe’s ORE. Once an instrument is deployed--whether in a clinical setting, on PatientsLikeMe.com, or elsewhere--patient-provided data will be subject to the regulations that govern that data in that specific setting.
Are there any other companies involved in this initiative?
We have a stellar advisory board of respected leaders in the field. You can read more about them here.
What kinds of information will the platform collect from patients?
ORE is where researchers, clinicians, academics and patients can interact to develop and improve outcome measures. In this collaborative environment, researchers will be able to prepare a health outcome measurement using real-time feedback from patients, other researchers, and clinicians. Members from PatientsLikeMe can provide both qualitative feedback about their health experiences through our main site and, by testing draft measures developed on ORE, quantitative evaluation of the instrument’s accuracy and validity. By contributing to measure development in this way, PatientsLikeMe members can potentially improve their own understanding of their disease, but more importantly can leverage their experience to help others live better, too. Each patient's participation can improve our understanding of disease and help future, yet-to-be-diagnosed patients.
How can I sign up for ORE?
We’d be happy to talk to you about your research project. Please contact firstname.lastname@example.org. If you’re a patient who would like to contribute to research and give feedback on measures, you can become a member of PatientsLikeMe here.
Can I join using an instrument that’s already in development?
We welcome proposals at all stages of instrument development, including blank-slate new projects, draft instruments that require psychometric evaluation, and updates to existing instruments. Preference is given to instruments that have completed concept solicitation, as they can immediately proceed to psychometric evaluation with patients.
What languages are supported?
Although the patient community on PatientsLikeMe is predominantly English-speaking, ORE supports the authoring of instruments in any language. In fact, our own MS-TAQ has several translations available in the library.
Is there a cost to use the platform?
The ORE tools, including the library and study authoring tools, are available either publicly or with a free registration. To field a study to patients in the PatientsLikeMe network, or to obtain assistance in your project from our research staff, an agreement and fee are required. Please contact us at email@example.com if you wish to discuss your specific project.
PatientsLikeMe Vice President of Innovation Paul Wicks
“We’re only beginning to see how ORE can simplify and speed up the research process, and how our members’ experience with more than 2,000 conditions can help researchers more clearly hear the patient voice.”
About Paul Wicks
An internationally recognized expert in the psychological aspects of neurodegenerative conditions, Paul is responsible for the scientific and medical validity of PatientsLikeMe’s research platform. He leads PatientsLikeMe’s ORE initiative, as well as a team of experts charged with conducting scientific research that generates insights from the health data shared by our members.