Resources, Roles, and Returning Value: Lessons from Patient- and Participant-Driven Research Communities (Part 1)
- The PCORI Strategic Plan
- Our Programs
- Our Vision & Mission
- Financials and Reports
- The PCORI Strategic Plan
- Evaluating Our Work
- Executive Team
- Office of the Executive Director
- Program Support and Information Management
- Staff Conflict of Interest Disclosures
- PCORI's Advisory Panels
- Procurement Opportunities
Past Opportunities to Provide Input
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
- Past Opportunities to Provide Input
PCORI’s mandate to fund research that is done differently requires engagement of patients and stakeholders as partners. By “engagement in research,” we refer to the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the research process. We believe that such engagement can influence research to be more patient-centered, relevant, and trustworthy and ultimately lead to greater use and uptake of research results by patients and the broader healthcare community. As healthcare research has evolved to become more patient-centered, patients and communities have become more active drivers of research, and likewise, patient-led organizations have increased their involvement in research.
Part 2: Addressing Challenges Facing PDRCs
The second of this two-part blog series on Patient or Participant-Driven Research Communities (PDRCs) looks at the challenges that PDRCs face and how they are being addressed.
Understanding the Role of PDRCs in Clinical Research
A Patient or Participant-Driven Research Community (PDRC) is an organization or group of individuals/organizations that is led by patients and participants—people with lived experiences as patients and caregivers. The primary purpose of a PRDC is to enable research (i.e., planning, conducting, dissemination, and/or implementation) that is a priority to patient and caregiver communities.
Collectively, PDRCs advance patient and participant-driven research agendas by contributing to all phases of research. PDRCs are diverse in their experience, resources, capacity, and aims—however, many participate in a broad array of research activities, including: funding research, leading, or collaborating on research, connecting research stakeholders, providing education and training, collecting and sharing data, disseminating and implementing research findings, and research advocacy.
Through these activities, PDRCs prioritize patient, participant, and caregiver values as a central focus. PDRCs’ research partnerships require them to earn and maintain trust and demonstrate tangible benefit for patients, participants, and caregivers. Because of their strong ties to the research field and their commitment to patient, participant, and caregiver communities, PDRCs have emerged as unique research stakeholders who can bridge the gap between research, practice, and patients.
PDRC Research Activities
PDRCs fund research that focuses on issues of importance to their patient and participant communities, such as regularly providing grant awards to researchers or co-funding research with other organizations. Co-funding research with advocacy organizations and industry partners provides an opportunity for PDRCs to multiply their impact and support larger studies than they can fund alone.
|Lead or Collaborate on Research
PDRCs lead and/or collaborate with partners to conduct research, including designing, planning, and implementing studies (i.e., recruitment, data collection, analysis). Some PDRCs conduct their own research and/or collaborate with external researchers as equal partners to advance patient-driven research priorities.
|Connect Research Stakeholders
PDRCs connect and convene patients, participants, caregivers, researchers, and other stakeholders. This may occur on an intermittent basis (e.g., annual conferences) or through maintaining an ongoing relationship (e.g., a research collaborative).
|Provide Education and Training to Facilitate Research
PDRCs educate patients, participants, and caregivers to prepare them to engage meaningfully with researchers (e.g., education about research methods). Trainings for researchers, clinicians, or other stakeholders provide information on patient/ participant-driven research methods.
|Collect and Share Data
PDRCs collect and share patient and participant data (e.g., patient-reported information, patient-reported outcomes, wearable and device data, biospecimens). Some PDRCs offer patients, participants, and caregivers access to data at the individual- or group-level, which can inform their health care decisions. Some PDRCs also share de-identified patient/participant data with researchers to promote research that is of interest to the PDRC’s patient or participant community.
|Disseminate and Implement Research Findings
PDRCs disseminate research findings to patients, participants, caregivers, and other stakeholders via digital means (e.g., websites, social media, newsletters, podcasts) and in-person communications (e.g., webinars, conferences, outreach staff). PDRCs may also implement research findings by supporting integration of results into care delivery protocols and processes.
PDRCs advocate for advancement of a patient/participant-driven research agenda. They may engage with policymakers on research-related issues by encouraging prioritization of research deemed important or impactful to patients/participants. Some PDRCs also advocate for appropriations for patient/participant-driven research.
Supporting Learning Among PDRCs
Recognizing the varied capacity and challenges that face PDRCs, PCORI released a limited funding opportunity for a subset of PDRCs to enhance their engagement activities. In addition to this funding opportunity, and in partnership with NORC and AcademyHealth, PCORI formed a Learning Network of eight PDRCs to create a forum for peer-to-peer learning, and to identify and address key challenges facing PDRCs.
Over 18 months, activities of the Learning Network included: monthly learning network meetings, bimonthly seminars that invited outside expert speakers to discuss key strategies for PDRCs, including effective storytelling, approaches to creative digital engagement, and sharing data and research findings with others. Creation of the Learning Network was meant to foster knowledge sharing and empower PDRCs to tackle the unique challenges they face.
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