Engaging Patients in Information Sharing and Data Collection: The Role of Patient-Powered Registries and Research Networks [Internet]

Excerpt

To focus research more directly on patient and family member needs, patient and family advocates and organizations have created and operated “patient-powered” patient registries and research networks since as early as 1995. These registries and networks are distinguished from researcher-generated registries in that the registry (or network) and the research it yields is managed by patients and family members themselves, often through a disease advocacy organization or a network of organizations that receives advice and input from a scientific board of advisors. Patient-powered registries (PPRs) and patient-powered research networks (PPRNs) offer new directions for patient-centered outcomes research, and contribute to translational science in important ways. Experts agree that these registries are transforming patient/caregiver support and advocacy groups into research organizations. They also provide patients and family members another way to become engaged in research beyond the role of advisor or informant to researcher-generated studies.

This paper will describe PPRs and PPRNs and outline the considerations for patient advocacy and support organizations wishing to create or participate in these entities. The first section of the paper offers a definition and shared characteristics of both researcher-generated and patient-generated patient registries and research networks. The second section outlines the current pathways that exist for the creation of or involvement with a PPR and/or PPRN, and the advantages and disadvantages of each path. The final section reviews emerging issues in the rapid evolution of patient-powered registries and research networks.