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Evaluating methods to engage minority patients and caregivers as stakeholders
Investigator (PI): Turner, Barbara J
Performing Organization (PO): (Current): University of Texas Health Science Center at San Antonio, Center for Research to Advance Community Health - ReACH / (210) 562-5551
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2013
Final Year: 2018
Record Source/Award ID: PCORI/ME-1303-5729
Funding: Total Award Amount: $752,805
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: For patient-centered outcomes research (PCOR) to help patients to make better health care decisions and to take advantage of proven health care advances, patients need to serve as advisors to help these studies meet community needs. However, patients and caregivers are often not included among advisors from the community (called stakeholders) for PCOR. In this project, we are studying the best ways for patients to serve as stakeholders, especially people from hard-to-reach groups or who are often not involved in research. Our project has two goals: 1) to study two methods to recruit minority (Hispanic) patients and caregivers to be stakeholders and 2) to develop a guide for researchers and the community about ways to best involve patients and caregivers as stakeholders to guide PCOR. Our study is being held in two similar Texas counties (Frio and Karnes) with at least 50% Hispanic residents. We will compare two different ways to recruit Hispanic patients to be stakeholders with the help of two community advisory boards (CABs) from each county. The CAB includes people who work in health care, business, or other groups who have strong ties to the county. In Frio, the CAB will help recruit people to sign up as stakeholders and these people ask others to be stakeholders and those people will ask others to join. This is called respondent driven sampling (RDS). In Karnes, the CAB will help us learn about the types of people who live in the county and what they do so that our research team can specifically ask people from different groups to be stakeholders. This is called purposive sampling (PS) and we believe that this is more representative of community opinions. Our goal is to recruit 65 people in each county to be stakeholders who are Hispanic, aged 40-75, and have chronic pain in their back or joints or give care to such a person (total 130). The topic that our stakeholders will discuss is improving care options and decision making by persons with chronic low back pain (CLBP) to improve daily function. Stakeholders will learn about the problems of treating CLBP from videotaped patient stories and a web-based program for a mobile app. In a series of group meetings, stakeholders will separately and as a group generate ideas for research to improve care for CLBP. We will evaluate and compare the RDS and PS methods of recruiting stakeholders based on 1) staff resources/time, 2) whether the stakeholders are a diverse group, 3) stakeholder experiences, 4) mathematical grouping of their ideas on maps, and 5) ratings of each group's ideas on importance and how practical they are from an Internet survey of 400 Hispanic adults from Texas. Based on this work, we will develop a guide that will help researchers evaluate and use the best methods to involve patients and caregivers to serve as stakeholders. This guide will allow patients to advise how PCOR can best meet their own and their community's needs with a final goal of improving their health.
MeSH Terms:
  • Adult
  • Aged
  • * Caregivers
  • Chronic Pain /*therapy
  • Community-Based Participatory Research
  • Hispanic Americans
  • Humans
  • Internet
  • Low Back Pain /*therapy
  • Middle Aged
  • * Minority Groups
  • * Patient-Centered Care
  • Program Development
  • Research Design
  • Texas
Country: United States
State: Texas
Zip Code: 78229
UI: 20143576
Project Status: Completed
Record History: ('Project extended to 2018, 2/01/19 ',) ('2017: Project extended to 2017.',)