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.

Contents

• Introduction
• Defining Patient Registries and Research Networks
  • Patient Registries
  • Research Networks
  • Elements of Successful Patient-Powered Registries and Research Networks
• Pathways to Creating a Patient-Powered Registry or Network
• Emerging Issues
• Conclusion
• Resources
• References
• About This Paper
• Technical Expert Panel

Prepared for: Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services¹, Contract No. 290-2010-00005C, Prepared by: Thomas A Workman, Ph.D., American Institutes for Research²

Suggested citation:

Workman TA. Engaging Patients in Information Sharing and Data Collection: The Role of Patient-Powered Registries and Research Networks. AHRQ Community Forum White Paper. AHRQ Publication No. 13-EHC124-EF. Rockville, MD: Agency for Healthcare Research and Quality; September 2013.

The Agency for Health Care Research and Quality’s (AHRQ) Effective Health Care Program conducts and supports research focused on the outcomes, effectiveness, comparative clinical effectiveness, and appropriateness of pharmaceuticals, devices, and health care services. More information on the Effective Health Care Program and electronic copies of this report can be found at www.effectivehealthcare.ahrq.gov.

The Community Forum was funded under the American Recovery and Reinvestment Act (P.L. 111-5) to expand public and stakeholder engagement in AHRQ-supported comparative effectiveness research programs. This final report was developed with ARRA funding, by the American Institutes for Research, under AHRQ contract number 290-2010-00005.

The AHRQ Task Order Officer for this project was Joanna Siegel, Sc.D. The findings and conclusions in this document are those of the authors, who are responsible for its contents; the findings and conclusions do not necessarily represent the views of AHRQ or the U.S. Department of Health and Human Services. Therefore, no statement in this report should be construed as an official position of AHRQ or the U.S. Department of Health and Human Services.

This report may periodically be assessed for the urgency to update. If an assessment is done, the resulting surveillance report describing the methodology and findings will be found on the Effective Health Care Program website at: www.effectivehealthcare.ahrq.gov. Search on the title of the report.

None of the investigators has any affiliations or financial involvement that conflicts with the material presented in this report.

1

540 Gaither Road, Rockville, MD 20850; www​.ahrq.gov

2

1000 Thomas Jefferson St., NW, Washington, DC 20007