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Collective Insight
All too often, older adults are research subjects with no say in research topics or methods. As a result, researchers lose opportunities to make their research meaningful to those most impacted: older adults. They also lose the opportunity to improve outreach, validate their tools and findings, and disseminate their findings far and wide. Patient-Centered Outcomes Research (PCOR) recognizes the positive role older adults and their caregivers can play in research prioritization, design, implementation, and dissemination. Sometimes this work is called person-centered research, engaged research, or community-driven research.
This PCOR Checklist was created by a workgroup of older adults, faculty, and students. Collective Insight received funding from a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EACB-26961) to complete this project. PCORI is an independent, nonprofit research organization that seeks to empower patients and others with actionable information about their health and healthcare choices. PCORI funds comparative clinical effectiveness research (CER), which compares two or more medical treatments, services, or health practices to help patients make better informed decisions. While this tool was funded to influence PCOR/CER, it can be used to expand older adults’ engagement within a range of research models. If you have suggestions on how to improve this tool, please contact Missy Destrampe, missy@collectinsight.com.
WHY?
Why an Aging PCOR Checklist?
The Aging Patient-Centered Outcomes Research Checklist (PCOR Checklist for short) helps academic leaders advance PCOR within aging-focused research. This is not a test for which you will be graded! Instead, we hope to spark conversations among colleagues about ways to infuse older adult voices into our teaching and research methods, so our scholarly work is guided by the very people we seek to understand and support - older adults.
Glossary of Terms
Additional Terms for PCOR
In person-centered or patient-centered research, the priorities, methods, and dissemination are driven by the knowledge and experiences of those most impacted by the research. There are multiple research concepts that prioritize the engagement of individuals and communities with lived experience, which could be considered PCOR. A few examples of PCOR concepts to be considered when completing this Checklist are provided below. Each term links to the source of this definition. A complete citation list is provided at the end of this document for further review.
Engagement Terms and Concepts:
Consider the following approaches as relevant to PCOR when completing this assessment:
Individual and collective actions designed to identify and address issues of public concern
The process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the wellbeing of those people
Community-Based Participatory Research (CBPR)
A partnership approach to research that equitably involves community members, organizational representatives, and academic researchers in all aspects of the research process
Comparative Effectiveness Research (CER)
The generation and synthesis of evidence that compares the benefits and harms of alternative approaches to prevent, diagnose, treat, and monitor a clinical condition, or to improve the delivery of care
Participatory Action Research (PAR)
A research method that involves researchers and participants working together to identify a problem and develop a researched-based solution
Patient Centered Outcomes Research (PCOR)
The meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the entire research process—from planning the study, to conducting the study, and disseminating study results
Public Participation/Public Involvement in Research
Research being carried out ‘by’ or ‘with’ members of the public rather than ‘to,’ ‘about,’ or ‘for’ them. It is an active partnership between researchers, patients, caregivers, and members of the public that influences and shapes research
Additional Glossary Terms
The PCOR Checklist highlights opportunities for community partnerships. More information on these partners can be found here:
Age Friendly University (AFU)
A university that has met the 10 AFU principles that support active, healthy aging and include older adults in the core elements of the university
Osher Lifelong Learning Institute (OLLI)
A membership-based lifelong learning program for persons over 50 years old located on University campuses across the country
Carnegie Community Engagement Distinction
The Carnegie Foundation's Elective Classification for Community Engagement is a way for Colleges and Universities in the US to gain recognition for institutionalizing community engagement
Campus Compact
The largest and oldest higher education association dedicated to higher education civic and community engagement
Carpini, M. (n.d.). Civic engagement. American Psychological Association. Retrieved from https://www.apa.org/education-career/undergrad/civic-engagement
Clinical and Translational Science Awards (CTSA) Consortium’s Community Engagement Key Function Committee. (2011, June). Principles of Community engagement (second edition). Retrieved from https://www.atsdr.cdc.gov/communityengagement/pdf/PCE_Report_508_FINAL.pdf
Detroit Urban Research Center. (n.d.). What is CBPR? | Retrieved from https://www.detroiturc.org/about-cbpr/what-is-cbpr
Henderson, C. (n.d.). What is comparative effectiveness research? What is CER? Retrieved from https://tracs.unc.edu/index.php/services/comparative-effectiveness-research/what-is-cer
Baum, F., MacDougall, C., & Smith, D. (2006, October). Participatory Action Research. Journal of epidemiology and community health. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2566051/
Patient-centered outcomes research. PCORI. (2022, February 8). Retrieved from https://www.pcori.org/research/about-our-research/patient-centered-outcomes-research
NIHR. (n.d.). Briefing notes for researchers - public involvement in NHS, Health and Social Care Research. Retrieved from https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371
Dublin City University. (n.d.). Principles: Age-friendly university: Age friendly university. Retrieved from https://www.dcu.ie/agefriendly/principles-age-friendly-university
University of Massachusetts Boston. (n.d.). Osher lifelong learning institute. Retrieved from https://www.umb.edu/olli
Citations
Who?
Who Should Complete the Aging PCOR Checklist Work?
Anyone can complete this Checklist, but we think those who lead academic programs and approve curricula may have the biggest opportunities to apply what they learn. We recommend you complete this Checklist with a small workgroup or committee that can collectively answer the questions in this Checklist. For instance, you may call on an existing Age Friendly or Diversity, Equity, and Inclusion committee within your academic program. We also encourage you to engage older adults and students in the review of this Checklist, for instance, from an Osher Lifelong Learning Institute and student associations.
How?
How does this Aging PCOR Checklist Work?
This Checklist has four domains. Within each of these domains, we share five to seven activities that can drive PCOR within your learning community. You may not be doing any of these activities or you may be doing a few of them. That is ok because there are no wrong answers. This Checklist simply provides examples of ways you can infuse PCOR concepts into your teaching and research activities. PCOR is a new concept for many faculty and students. Please also refer to our Glossary of Terms as you work through this PCOR Checklist. While we try to simplify concepts, we know that engaged research has various historical contexts and discipline-driven terminology.
