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 (ICPSR 39616)

Version Date: Dec 15, 2025

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Principal Investigator(s):
Zsolt J. Nagykáldi, University of Oklahoma Health Sciences Center

https://doi.org/10.3886/ICPSR39616.v1

Version V1

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Summary

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.

Citation

Nagykáldi, Zsolt J. 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. Inter-university Consortium for Political and Social Research [distributor], 2025-12-15. https://doi.org/10.3886/ICPSR39616.v1

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Funding

Patient-Centered Outcomes Research Institute (PCORI) (ME-1403-11937)

Subject Terms

Geographic Coverage

Distributor(s)

Inter-university Consortium for Political and Social Research
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Time Period(s)

2014 -- 2020
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Study Purpose

To explore a community values-driven research priority-setting process, including a framework for determining top priorities, for community stakeholder organizations.

Study Design

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.

Universe

Research partners from community stakeholder organizations in California, New York, and Oklahoma

Data Source

Research partner organization meeting notes and deliberation questionnaires

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Original Release Date

2025-12-15

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Notes

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