Nursing homes care for some of the most vulnerable members of our communities — yet they are often left out of important healthcare research. This project aims to change that by empowering nursing home stakeholders to actively engage in research that improves care, strengthens decision-making, and builds a nationwide network for lasting impact.
The Problem: Not Enough Research in Nursing Homes
There are over 15,300 nursing homes in the United States, caring for about 1.3 million people, most of whom are older adults with serious health needs. Yet less than 1% of clinical trials research occurs in nursing homes. Of those few studies, nearly 1 in 7 stopped early or never finished due to lack of funding, resources, or organizational support. This means important healthcare decisions are being made without enough evidence about what works best for nursing home communities and their residents.
The solution: Community Engagement + CER Training and Collaboration = EMPOWERING US NH Stakeholder Network
Community Engagement
Our project aims to empower nursing home stakeholders (nursing home residents, families, staff, and leaders) to become active partners in research that truly reflects their health care decision-making needs. To do this, we have created a Community Advisory Board to launch a national research network beginning with one state, Pennsylvania.
This CAB* includes residents, caregivers, administrators, researchers, advocates and regulators—all working together to create tools, resources, and infrastructure supports that make research engagement more accessible and meaningful.
*A Community Advisory Board (CAB) is a group of community members who provide guidance and feedback on projects, initiatives, or policies that affect their community. CABs act as a bridge between the community and an organization, ensuring community perspectives are considered in decision-making processes.
With support from Penn State Ross and Carol Nese College of Nursing and the AgingIN, this project empowers nursing home communities to be more confident and knowledgeable when engaging in meaningful research.
CER Training and Collaboration
Clinical Comparative Effectiveness Research (CER) evaluates and compares different healthcare interventions, aiming to determine which treatments work best for individual residents based on their unique needs and preferences. It is a critical component of facilitating health care decision-making and delivering quality care in nursing homes.
Designed to help stakeholders understand the language and logic of the CER research process in an engaging way PCORI has put together a publicly available and on-demand training package.
EMPOWERING US nursing home stakeholder network
People networks are webs of relationships an individual has with other people, both formal and informal. These networks are built through interactions and connections, and are valuable resources for information, support, and opportunities. The empowering US NH stakeholder network connects nursing home residents and families, staff, leadership, healthcare professionals, regulators, and researchers to collaborate on patient-centered comparative clinical effectiveness research (CER). Penn State and the AgingIN will spearhead this effort.
People networks are webs of relationships an individual has with other people, both formal and informal. These networks are built through interactions and connections, and are valuable resource for information, support, and opportunities.
Through the Pioneer Network Culture Change Coalitions, AgingIN already has an existing and available infrastructure to support a national network of research collaborators that align with the values and goals of CER. Pennsylvania’s VOICE PA, a nonprofit Culture Change Coalition supporting elder care and decision-making, has shown interest in leading this effort in PA.
