DOI: 10.3886/icpsr39616.v1
title: Development of a Patient-Directed Queries Network to Engage Patients and Prioritize Their Questions to Inform the Patient-Centered Outcomes Research Institute (PCORI) Research Agenda [Methods Study], United States, 2014-2020
title: Version 1

description: Research teams usually decide on research agendas, or issues and questions to study in research projects, even when community stakeholder organizations, or CSOs, such as healthcare networks and patient organizations, are involved.
In this project, the research team explored a process for helping CSOs create research questions and set research agendas.
description: To explore a community values-driven research priority-setting process, including a framework for determining top priorities, for community stakeholder organizations.
description: In this framework development study, researchers developed and explored the research priority-setting process with six community stakeholder organizations (CSOs) from California, New York, and Oklahoma.The research priority-setting process had five steps:

Identify each CSO's 15 most pressing issues.
Create community values-informed decision-making criteria.
Using the criteria developed in step 2, prioritize the top three issues.
Collect and weigh evidence on the top three issues.
Choose a final priority by weighing the costs and benefits.

To assist the CSOs in deciding on a final research priority, researchers developed a six-domain deliberation framework:

Risk-benefit ratio: The likelihood of major population health impact
Reduced uncertainty: The likelihood that strong science supports the research
Feasibility: The likelihood that changes required to implement the research are feasible in the real world
Sustainability/durability: The likelihood that the research intervention will be sustained and its outcomes long-lasting
Reach: The likelihood that a significant proportion of the target population will benefit
Person-centered and community-aligned: Confidence that research will strengthen primary health care and align with community needs, values, and goals
Each domain had a set of questions that organizations could use during the deliberation process.

CSOs used two approaches to compare their top issues and choose a final research priority using the deliberation framework. Some CSOs discussed the framework using value trees, a graphic that listed each domain on a leaf along with a deliberation question. Other CSOs completed scaling exercises, in which members estimated on a scale of 1 to 10 the likelihood of the research improving that domain's value, their confidence in that estimate, and how important having information on that domain was to decision making. Patients, clinicians, researchers, and community-based organization representatives provided feedback throughout the study.
description: Datasets: 
DS1: Development of a Patient-Directed Queries Network to Engage Patients and Prioritize Their Questions to Inform the Patient-Centered Outcomes Research Institute (PCORI) Research Agenda [Methods Study], United States, 2014-2020
description: Research partners from community stakeholder organizations in California, New York, and Oklahoma.