Resources for patient-centered clinical research
We've gathered these resources for patients and researchers that may help engaged research teams work effectively. For example, teams often benefit from attention to early expectation setting, working to avoid technical jargon, and appropriately reimbursing all research team members for their time and effort. Please check out these resources for other ideas that may help your team.
PCORI Building Effective Multi-Stakeholder Research Teams
PCORI Research Fundamentals
Involving Patient and Family Advisory Councils in Different Stages of Research was developed by the Institute for Patient and Family Centered Care to help explain how patients/families can contribute to research.
The PCORI Engagement Rubric is a useful guide for stakeholder engagement. It was developed by the Patient-Centered Outcomes Research Institute (PCORI). This tutorial explains how to use it.
The PCOR Toolkit, designed by El Futuro, Inc, tries to make patient-centered outcomes research easier for community health organizations serving Latinos It could be adapted for other research settings and stakeholder groups.
Guidance on Community-Engaged Research with LGBT Populations was developed by PRIDEnet, a PCORnet Patient-Powered Research Network.
Go Slow to Go Fast: Successful Engagement Strategies for Patient-Centered, Multi-Site Research, involving Academic and Community-Based Organizations This article presents an analysis from a large multi-site research project, aiming to understand how and when stakeholder worked well and identify areas for enhancing engagement.
Engagement Tool and Resource Repository for Patient-Centered Outcomes Research is a searchable peer-to-peer repository of engagement resources that have been developed by PCORI awardees.
Tool Box for Creating Sustainable Partnerships with Patients & Families in Research is a rich archive of engagement materials assembled by the Institute for Patient and Family Centered Care.
A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research For those who like to read the medical literature, this evidence review may be of interest.
A glossary of common research terms can help introduce stakeholders to some common research language (developed by the Maryland Center for Health Equity).
Community Partners Research Ethics Training (CPRET) This resource provides instructions for obtaining research ethics training in a more accessible manner than traditional training for scientists (developed by the University of Pittsburgh Clinical and Translational Science Institute).
Citizen Scientist Curriculum, developed by researchers at the University of Florida, helps bridge the gap between researchers and community members.
Tips for Establishing a Stakeholder Group Structure were developed for the clinical setting, but many also apply to research teams.
Principles for running an engagement meeting can be used to orient and guide stakeholder interactions, Greater Plains Clinical Research Network.
A Toolkit for initiating partnerships includes items such an engagement checklist, Memorandum of Understanding template & a stakeholder feedback survey, developed by the Understanding How Antibiotic Use Affects Childhood Obesity and Growth Study in coordination with Genetic Alliance.
Patient Payment, Perk and Reimbursement Guideline for the Greater Plains Collaborative includes background information and specific guidelines on reimbursing partners for their time and effort in stakeholder-engaged research.
Methods used to develop patient-centered research agendas, including thoughts on topic generation and research topic prioritization, were developed by a REACHnet team focusing on obesity and diabetes, but could be adapted to other topic areas. REACHnet Clinical Research Network
Example of how deliberation can be used to identify and prioritize research topics among diverse stakeholders is described in a research paper. Similar methods could be applied in other contexts.
Toolkit for implementing Community Engagement Studios to engage patients in study design can help you plan discussion between a panel of community stakeholders and researchers, so that patient perspectives are included in grant proposals. Available in English and Spanish.
Prototype manual to help orient stakeholder partners to the process of scientific writing & publication, developed by the PCORnet Bariatric Study.
Illustration of how infographics can be used to convey complex scientific information This brief video was developed by patient partners from the PaTH to Health – Diabetes Study and graphic design professionals.
The WE-ENACT Survey may be useful for your team’s evaluation of engagement efforts.
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