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- Draft Key Questions: Systematic Review of Audio Care for the Management of Mental Health and Chronic Conditions (2023)
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Past Opportunities to Provide Input
- Proposed New Methodology Standards for Usual Care as a Comparator (2023)
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- 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)
A Eugene Washington PCORI Engagement Award project’s location plays a distinct role in its planning and implementation. For example, rural populations and people living in low-income and historically underserved areas in the United States have less access to health care and healthy foods, according to the Centers for Disease Control and Prevention. Additionally, the rural population is geographically widespread and has a growing community of immigrants, which can make communication and cultural relevance difficult in the context of health care and research engagement.
While there are clear advantages to working in densely populated areas with more-readily available resources and participants, two recent projects and their teams show that the perceived challenges of working in rural locations can be overcome with proper planning and engagement of rural communities.
MyPlate Dissemination in Rural California
In the desert region of California’s eastern Coachella Valley, Ann Cheney, PhD, led the MyPlate dissemination project, which is working with Latino and Purépecha farm-working communities.
Her University of California-Riverside (UC-Riverside) team’s first step was to listen to the community and learn its needs through a previous USMex Unidos por Salud assessment. Community members shared their concerns about obesity and diabetes, mostly in children, despite having access to fresh fruits and vegetables through the FIND Food Bank.
“While people could access foods, they expressed that they didn’t always know how best to use those foods in their daily diets,” Cheney said.
Through a partnership with a local federally qualified health center (FQHC), Borrego Health, already working within the population, the UC-Riverside team was able to build trust with the community. Then, they decided to try cooking demonstrations and use evidence from a completed PCORI-funded research study to help members of the community better understand how to incorporate foods from the FIND Food Bank into their meals.
Cheney believes connecting with rural populations can be difficult because universities are located far away, but in the virtual engagement context of COVID-19, UC-Riverside has more frequent contact with their stakeholders. While engaging virtually has caused new challenges, the team was able to overcome them to reach its main goal of creating a culturally competent cookbook in English, Spanish, and Purépecha.
The cookbook and cooking demonstrations have been successful because of their co-creation with the community. “An individual from the community cooks one of the recipes from the cookbook, talks about where they got the ingredients, and another member shares knowledge about how to live a healthy lifestyle,” Cheney said. Cheney believes that bringing patients and community members in as leaders and experts in the project is effective for engaging rural populations.
Given the project’s success, UC-Riverside is aiming to further disseminate the cookbook to other rural areas and test its ability to improve health.
While people could access foods, they expressed that they didn’t always know how best to use those foods in their daily diets.Ann Cheney, PhD Project Lead, MyPlate Dissemination Project for Latinos in Rural Communities
Cancer Control in Rural Appalachia
The Appalachian region of the United States is known for its natural beauty and for health disparities. To combat disparities in cancer care, the University of Virginia Cancer Center formed a Cancer Center without Walls Community Advisory Board (CAB) in 2013. This board comprises community-based organizations and FQHCs across three health districts in southwest Virginia.
Until a recent PCORI Engagement Award project, the group met about three times a year and had many innovative ideas yet lacked structure to carry ideas forward. That has changed with PCORI’s support. The result: the establishment of subcommittees meeting monthly, which community members lead or co-lead, as they are experts of their own circumstances and the best individuals to lead these groups.
“Through our award, we applied some basic principles of community capacity building and patient- centered research and advanced a partnership with an already-formed group that trusted one another and had synergy,” said project lead, Jamie Zoellner, PhD.
Still, there were challenges to actualizing the work. Continuity between meetings has been a challenge for the CAB since new voices are constantly being brought to the table. Some stakeholders may join or miss meetings and have trouble keeping up if communication is not thorough. However, working to retain and listen to each community viewpoint can stimulate rural engagement. The development of a website and monthly newsletters also help with continuity in communication.
One project goal is long-term empowerment of the CAB. “We want to continue having community members lead and pair them with researchers to support their ideas and help acquire funds to execute projects,” Zoellner said. She hopes the CAB will remain intact for longer than 10 to 15 years to help reduce the Appalachian region’s disparities. They have been successful so far, even publishing a journal article detailing their process. Also, they have submitted several partner-engaged cancer control outreach and research proposals.
Ultimately, learning about groups who are already working with patients in rural communities and establishing relationships with those community-based organizations ensures successful engagement with patients, improving their health outcomes and elevating their voices in research. These are just two examples of projects PCORI has supported in engaging rural communities. For more information on current and completed projects, and how to apply for an award, see the Engagement Awards web page.
What's Happening at PCORI?
The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.