By Missy Destrampe
The Aging PCOR Learning Collaborative works to encourage more researchers to view older adults as research partners, not research subjects.
Research often informs policies, funding, and systems of care in the field of long-term services and supports (LTSS). But what makes LTSS research truly meaningful? The Aging PCOR Learning Collaborative believes the answer lies in conducting engaged research.
The Aging PCOR Learning Collaborative works with researchers, funders, and gerontology programs to share the benefits and methods of Patient-Centered Outcomes Research (PCOR). The LeadingAge LTSS Center @UMass Boston, in partnership with Collective Insight, established the collaborative with support from the Patient Outcomes Research Institute.
WHAT IS ENGAGED RESEARCH?
Engaged research involves finding ways to bring the people most affected by research—older adults and their caregivers, for example—into discussions about research design and implementation. Researchers are most successful when they listen to their stakeholders, learn from stakeholder experiences, and adjust research priorities based on what they have learned.
Many aging-focused researchers lack the knowledge required to apply PCOR concepts. This knowledge gap limits opportunities for older adults and caregivers to inform the work of these researchers. Unfortunately, not all researchers see input from older adults as important to study design, even though many older adults are eager to engage in research. As a result, older adults are often underrepresented in research and, when they are included, they tend to be healthier than the population being studied. Engaged research can help address these representation limitations.
Engaged research isn’t just a one-time affair. Instead, it is a continual exchange between stakeholders and researchers to improve research methods.
WHAT IS THE AGING PCOR LEARNING COLLABORATIVE?
The Aging PCOR Learning Collaborative was created to highlight the importance of older adult-engaged research. Aging PCOR works to encourage more researchers to engage older adults in the design of research so older adults are no longer just seen as research subjects. The collaborative also helps prepare older adults to be active partners in the research process.
We focus on research topics, questions, and outcomes most important to older adults and those who care for them. Through virtual information sharing and capacity-building activities, we promote new learning by providing opportunities to reimagine older adults as collaborating research partners.
AGING PCOR’S WORK AND RESOURCES
Aging PCOR’s work is guided by two stakeholder advisory boards representing older adults, researchers, and funders. Its work involves:
- Supporting the teaching of engaged research in gerontology programs.
- Encouraging research funders to value engaged research methods when evaluating proposals.
- Helping aging-focused researchers, older adults, caregivers, providers, and others in the aging field learn how to make engagement work.
The collaborative shares information related to engaged research in three ways:
- The Aging Research Network is an online community that brings together older adults, caregivers, researchers, and others to learn about stakeholder engagement in research. Members post about their interests, share events, find resources, and connect with others.
- The Aging PCOR Learning Collaborative Video Series is geared toward researchers and students who are new to engaged research. The series uses five-minute videos to introduce PCOR concepts, explain the benefits of engaging older adults in research, and break down strategies for improving research design so researchers can be confident in their research results.
- The Aging PCOR Learning Collaborative Podcast Series features interviews with a variety of experts and older adults involved in engaged research. The series shares engaged research success stories and lessons learned, offers the funder perspective on how to incorporate engagement into proposals, and features strategies for garnering that funding.
WHAT’S NEXT?
During its first year, the Aging PCOR Learning Collaborative developed educational information and built connections. During its second year, the collaborative will focus on:
- Developing a gerontology PCOR self-assessment to examine ways to introduce PCOR into teaching.
- Conducting aging-related funder discussions on ways to infuse PCOR into funding portfolios.
- Providing technical assistance and trainings to develop or improve engagement practices.
FOR MORE INFORMATION
For more information, visit the Aging PCOR Learning Collaborative webpage.
The Aging PCOR Learning Collaborative is funded by a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (19514-LTSS).
Missy Destrampe is program manager at Collective Insight.