Research Participant Portal of Portal Prjects

National Cancer Institute, Frederick MD

Investigators

Abstract

The National Cancer Institute (NCI) is the leading cancer research organization of the U.S. Government within the National Institutes of Health (NIH) and the Department of Health & Human Services (HHS). The NCl's mission is to plan, conduct, and coordinate the National Cancer Program, as legislated in the National Cancer Act of 1971, including determining the cause of cancer, improving clinicians' ability to diagnose, prevent, treat, and rehabilitate cancer patients and provide support for their families. As part of the Cancer Moonshot program, the Blue Ribbon Panel (BRP) recommended a portal to support direct participant engagement, under the Enhanced Data Sharing Working Group and the Network for Direct Patient Engagement. Portals represent one means of enabling two­way participant interaction with research studies, and are increasingly being utilized as part of NCI participant engagement projects. Two existing NCI projects supported by Moonshot call for a web portal to support interaction between the project team and participants, and it is anticipated that future engagement projects will have a similar need. The Moonshot Biobank, led by the NCI Division of Cancer Treatment and Diagnosis, is developing a portal for sustained interaction with diverse participants to develop a longitudinal biospecimen collection. The NCI Center for Cancer Research (CCR) Rare Tumor Patient Engagement Network (RTPEN), which consists of two projects, NCI-CONNECT and MyPART, is directly engaging with participants to advance research on rare tumors and to provide personalized care. These participants represent groups with distinct engagement needs, including adult and pediatric populations, and plan to use a portal to self-report their data and to get recommendations for relevant clinical trials. The FY20 RFA Participant Engagement and Cancer Genome Sequencing {PE-CGS} will be supporting extramural engagement projects that may utilize portals to interact with participants. Future projects utilizing portals are expected, reflecting a growing interest in direct engagement at NIH and in biomedical research in general (e.g., All of Us, the Million Veterans Project, the UK Biobank, and Genetic Alliance's Platform for Engaging Everyone Responsibly). More broadly, healthcare technology is moving in a direction that enables patients to directly contribute their data collected for clinical care purposes toward research studies, such as Medicare claims data with the Centers for Medicare and Medicaid Services' (CMS) BlueButton API using FHIR initiative (BlueButton 2.0) and electronic medical record data with NIH's Sync for Science work. This project to develop an NCI portal to support participant engagement studies is in direct alignment with this important trend.