Strategies for Involving Stakeholders in Developing Research Questions & Protocols

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Online Tools, Apps, and Social Networks

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ABOUT Network

Best Practice Sharing Session: ABOUT Network GAP Tools

GAP360 is a 7-step patient-centered process that enables stakeholders to submit their own research questions through an online form. Question submissions are then:

·       Assessed via advisory board queries, community surveys, and literature reviews.

·       Prioritized by the Steering Committee, Research Work Group and Executive Committee, with recommendations for next steps.

From that point, study design considerations are made, a proposal is written and submitted, the study is conducted, and results are published.


Question submissions are shared on the ABOUT Network website with information on the results of prioritization and the status of the research process in relation to that question.


Mobile App Overview Presentation – ArthritisPower

The “ArthritisPower” app is a patient-centered research registry where users can:

·       Participate in research studies and in the research process by entering their health data into the app.

·       Share data with their clinicians and arthritis researchers, helping them learn how different treatments work for different people.


The ArthritisPower Patient Governor Group puts patients at the center of research by telling scientists and the AR-POWER community what issues are important to study from their perspective. Governors and the wider community are able to share experiences using the app and other open forums to impact research questions and protocols.


So, you want to get on MOSAIC?

Mosaic is an online forum that enables stakeholders to:

·       Share their research ideas.

·       Create or join a research team.

·       Collaborate in the design and conduct of a research project.


Once a research community has set up their own Mosaic online forum, participants are invited to register and can then post research ideas, and join the research team, and provide their feedback and suggestions.


iConquerMS™ Research Overview


iConquerMS™ is an online research community allowing those affected by MS to connect with researchers, clinicians, and others, and:

·       Participate in all aspects of the research process, including collectively identifying research topics and contributing suggestions for studies that matter to them.

·       Easily and privately take surveys about daily experiences and symptoms, and share their medical records.

·       Receive updates on what researchers are learning from the collected data by signing up for updates in the platform.

Documentation, Presentations, and Toolkits

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PXE International: People Driven Research Toolkit

Developed by PXE International, a member network of CENA, this toolkit includes detailed steps to facilitate community-driven research, including identifying relevant research topics and formulating research questions.

Recommended Patient Engagement Standards in Research Policy

This document details how the COPD PPRN engages stakeholders in each phase of research, including research question generation and study protocol development. Their strategies include:

·       Conducting a survey to identify questions that are relevant and important to stakeholders.

·       Enabling patient partners to help draft and/or revise the study materials and protocols.


Identifying Research Needs on the Ground

In this presentation, Principal Investigator Tom Carton discusses the REACHnet process of convening a multi-stakeholder group to identify research priorities among health system leaders. Strategies include:

·       Conducting a stakeholder analysis.

·       Enabling multiple types of stakeholders to contribute their unique perspectives, both independently and collaboratively

·       Using a variety of tools to collect and organize ideas.

·       Creating value for stakeholders through various means (e.g., hosting a meet and-greet before dinner and providing proper compensation for time and input).

Health Systems Interactions and Sustainability Task Force:

Critical Considerations for Researchers Working with Health Systems

This guidance document details how clinician stakeholders are critical to helping research teams identify research questions that will matter most to help them care for their patients. It also describes strategies for engaging clinician stakeholders in research topic selection and prioritization (p. 9), including assembling the following groups:

·       Stakeholder Research Prioritization Panel.

·       Clinician Board.

·       Condition-Specific Group.

·       Condition-Specific Advisory Board.


engagement, stakeholder engagement, protocol, research questions