Information Patients Can Provide Will Strengthen the Real-World Evidence That Matters to Them

By The ArthritisPower TeamNovember 2, 2021December 9th, 2021Research Registry

Nowell writes that patient-generated data has the potential to improve health outcomes and drive innovation and these potentials have not been fully realized. Nowell highlights the challenges of collecting and using real-world data, the value and challenges of patient-generated data for real-world evidence and engaged patient research networks. Patients can provide real-world data but must be appropriately and effectively engaged to do so.

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PatientSpot registry infrastructure was funded through a Patient-Centered Outcomes Research Institute Award (PCORI Contract Number PPRN-1306-04811). PatientSpot (formerly known as Arthritis Power) was jointly developed by the nonprofit Global Healthy Living Foundation (GHLF), its associated CreakyJoints arthritis patient community, and rheumatology researchers at the University of Alabama at Birmingham (UAB). We reserve the right to change and add sponsors and partner organizations and we also reserve the right to change placement of text on the page. Created by CreakyJoints® patient community in collaboration with patient advocates at Global Healthy Living Foundation (GHLF) and researchers at the University of Alabama at Birmingham (UAB), Arthritis Power (now PatientSpot)’s past participation in PCORnet®, the National Patient-Centered Clinical Research Network, was supported through multiyear, multimillion-dollar Patient-Centered Outcomes Research Institute funding awards [PPRN-1306-04811]. Global Healthy Living Foundation (GHLF), the parent organization of PatientSpot, receives grants, sponsorships and contracts from pharmaceutical manufacturers and private foundations. A full list of GHLF funders is publicly available here: https://www.ghlf.org/our-partners.