PatientsLikeMe opens up for patient-reported outcomes

PatientsLikeMe wants to improve patient-reported outcomes in clinical trials by opening up to developers of disease assessment questionnaires. The platform--Open Research Exchange--allows firms to work with the patient community to assess ways of gathering the outcomes data payers increasingly want.

PROs have risen in prominence in recent years--particularly for cancer and HIV--as a means of gauging quality of life and other aspects of patient well-being. Development of questionnaires to assess these metrics would benefit from the input of patients, who would be filling in the forms. PatientsLikeMe now aims to involve patients in the process by linking developers of PRO questionnaires to its online patient community of more than 200,000 members with more than 1,000 ailments. The online patient network is optimistic that this approach can streamline development of PRO instruments.

"With PatientsLikeMe, they come into a live situation, and with the first 10 to 20 patients, they can find out basic things about their instrument, such as that nobody is using the most severe ratings on the site, or that the questionnaire is too long. The patients are already here and they're willing to take part. So you can reduce the time from several years to several months," PatientsLikeMe R&D Director Paul Wicks told InformationWeek Healthcare.

The creation of the Open Research Exchange represents an expansion of the services offered by PatientsLikeMe. It has previously helped companies recruit patients for clinical trials--inking a deal with Sanofi ($SNY) just last week--and will now help to refine research processes too. Any PRO instruments developed using the platform must be made freely available for use by others. A researcher could sell related consulting services or use the questionnaire in a commercial app though.

As yet there is no indication of which organizations are trialling the tool, but an outcomes expert from Novartis ($NVS) sits alongside academics on the scientific advisory board. PatientsLikeMe said the board will support the project by introducing users to other technologies and partners to accelerate research.

- here's the InformationWeek article
- check out the press release

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