The Promise of Patient-Led Research Integration into Clinical Registries and Research

Background: While patients are increasingly engaged in clinical research and clinical registries in an advisory capacity, collaboration and patient leadership in clinical effectiveness research remains limited. Newer patient-led participatory outcomes research for Long COVID-19 has demonstrated the potential of patient-led outcomes research to assess treatment options for the clinical and functional outcomes that matter most to patients. The Patient-Led Research Collaborative (PLRC) was established to drive research to capture and share a bigger picture of the experiences of patients suffering from COVID-19 with prolonged symptoms using a data-driven approach. In this new research paradigm, patients move from research contributors to leaders of survey and research design. 

 

Proposed Solution to the Problem: The project team will develop tools and resources for traditional research entities and patient-led participatory research communities to overcome challenges in the organization and sustainability of patient-led outcomes research teams. The project team will develop innovative strategies to support capacity building and sustainability models for patient-led patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER), build bridges to the medical research community, and foster new models of collaborative PCOR/CER. 

 

Objectives:

• Develop innovative strategies to support capacity building and sustainability models for patient-led outcomes research

• Build bridges to the medical research community, and foster new models of collaborative PCOR/CER 

• Develop a model for community-driven patient-led outcomes research for replication in different clinical areas based on successes and lessons of the PLRC

• Foster collaborative models of clinical outcomes research and PCOR/CER across diverse medical and patient communities

 

Activities: The project team will conduct perception surveys and key informant interviews to understand the needs, challenges, barriers, and opportunities for the integration of patient-led outcomes research from the medical and patient communities. A multi-stakeholder advisory panel will be convened to promote collaboration of research experts and patient communities. The team will develop playbooks and training programs for patient communities and clinical research organizations.

 

Projected Outcomes: The team will develop effective strategies to support capacity building and sustainability models for patient-led PCOR/CER research, build bridges to the medical CER community, and foster new models of collaborative PCOR/CER. The team will develop the tools and resources necessary for institutions and organizations to replicate the inclusion of patient-led and patient-owned data into existing research platforms.

 

Patient and Stakeholder Engagement Plan: The project is designed to be a partnership between the clinical, research, and patient communities. The project team is a partnership between the Council of Medical Specialty Societies (CMSS) and Patient-Led Research Collaborative (PLRC). The PLRC team of patient researchers, as well as an expanded panel of experts and patient partners, will be involved at all stages of the project. 

 

Project Collaborators: Council of Medical Specialty Societies (CMSS), Patient-Led Research Collaborative