Networks will encourage their participant members to share their health information with researchers to support studies that have been identified as highly relevant and useful by network members.
Joe Selby, MD, MPH, Executive Director of the Patient-Centered Outcomes Research Institute (PCORI), announced an initiative to enable individuals to access data in their electronic health records (EHRs) and share it for research that could improve care for their conditions.
The initiative involves a pledge by 20 Patient-Powered Research Networks (PPRNs) to help their participating patients more readily obtain information from their EHRs. The PPRNs will encourage their participant members to share their health information with researchers to support studies that have been identified as highly relevant and useful by network members. These PPRNs are part of a research resource called PCORnet, a PCORI-funded initiative to build a national patient-centered clinical research network.
Including Women of Childbearing Age in Clinical Research
March 26th 2024In recognition of International Women's Month, we're featuring this recent talk between Associate Editor Miranda Schmalfuhs and Marie Teil, Global Head of UCB’s Women of Childbearing Age Program. They speak about the specific challenges women with chronic illnesses face when accessing appropriate treatment and participating in clinical trials, UCB's Women of Childbearing Age Program and it’s most successful strategies, and much more.
Improving Engagement While Maintaining Data Integrity & Validity
March 19th 2024In recognition of Women's Health Month, we're featuring this recent talk between Associate Editor Miranda Schmalfuhs and uMotif's Chief Product Officer, Julia Lakeland, discuss new technologies improving patient engagement and reducing the emotional and logistical burdens of participation, ethical considerations that should be addressed when implementing those technologies, while ensuring patient privacy, and much more.