Patients are on the frontline for health care. For example, they know firsthand the challenges of accessing limited health care resources in rural areas or navigating the advice of multiple providers. Sometimes, community groups are the medically underserved’s seemingly best link to health care resources and offer a nontraditional means of reaching chronic disease patients and those not part of the mainstream health care delivery due to geography, lack of resources, or fear.
Recognizing the valuable insights these patients and community leaders bring to health care research, the Patient-Centered Outcomes Research Institute (PCORI) is focusing research pipeline efforts around them. So far this year PCORI’s three-tier Pipeline to Proposal Awards Initiative has funded $700,000 to nearly 50 first-time awardees. Among the awardees are faith leaders willing to take part in tackling diabetes treatment adherence and youth mental health as well as representatives of underserved patient populations, including the transgender community, those leaving prisons, patients of poverty, or those living in rural areas.
The first tier of funding provides seed money to encourage development of partnerships and collection of ideas for comparative effectiveness research projects –comparing two health approaches that you already know work– among people who may not have ever received research funding previously. The Georgia Health Policy Center (GHPC) was selected as one of five regional Pipeline Award Program Offices and awarded funding to provide programmatic, fiscal, and operational support and management to the awardees in the southern region of the United States (from Virginia to Texas).
“PCORI created this initiative with the idea that if consumers are involved in research from the beginning, the path from the research to actual clinical impact would be more immediate,” says Karen Minyard, executive director of the GHPC and principal investigator for the PCORI project. “This project builds on the Georgia Health Policy Center’s long history of working to provide communities with technical assistance and takes advantage of our position and access to expertise within a research-based academic institution.”
Entering the ‘Pipeline’
As awardees enter the “pipeline,” funding awards support initiation of community partnership-building projects, including developing multi-stakeholder relationships, capacity, and infrastructure around shared interest in a health care topic. The hope is that awardees will progress through the three tiers of successive awards, building engagement and capacity along the way, and will ultimately develop a formal, fundable proposal for patient-centered outcomes research. Unique to the initiative is the fact that the research idea is developed in collaboration with the patients and communities most directly impacted, with the goal of developing a national network of these patient-centered research partnerships. As part of these network-building efforts, all Tier 1 awardees met at an awardee convention last week (Minneapolis, Minn.; Sept. 11) to share their experiences.
“Something exciting about this award program is that patients and other individuals in the community can actually serve as project leads for these awards, influencing the development of research questions at the ‘grassroots’ level,” says Deana Farmer, senior research associate at GHPC and project lead for the southern Pipeline Award Program Office. “The award to the Arkansas Transgender Equality Coalition is being led by a member of the transgender community who is gathering information from this community throughout the state, exploring issues of health, health care access and quality of care. Eventually, this organization, as well as the research and community partners who come to the table around the selected health issues, will decide on the research question, design, plan, and implementation together.”
Southern Awardees
Among the 10 Tier 1 southern state awardees managed by the GHPC are:
- Arkansas Transgender Equality Coalition will build an active partnership comprised of transgender community members, researchers, providers, and others to focus on improving the cultural sensitivity and quality of health care for transgender individuals.
- Texas A&M University – Faith-based organizations have regular access to a dedicated adult audience of patients and volunteers, and they typically have strong community credibility; therefore, they have the opportunity to gather information, generating a shared understanding of the behavior modifications necessary to successfully manage a disease such as diabetes.
- Tulane University – Former prisoners face a disproportionate risk of death in the immediate post-release period, making it a critical time to initiate community-based care for chronic conditions and behavioral disorders, including substance abuse. They have established a community-academic partnered workgroup in Louisiana, which has the highest incarceration rate in the United States.
Applications for another round of Tier I Pipeline to Proposal awards are expected to open in December 2015. For details, visit the website, www.pcori.org.