NCATS Day 2018: Community Engagement Resources

Returning Individual Research Results to Participants: Guidance for a New Research Paradigm

An ad hoc committee reviewed the current evidence on the benefits, harms, and costs of returning individual research results, while also considering the ethical, social, operational, and regulatory aspects of the practice. The resulting report offers a process-oriented approach to returning individual research results that considers the value to the participant, the risks and feasibility of return, and the quality of the research laboratory.

Institute of Medicine (IOM) Recommendations for Returning Individual Research Results to Participants (PDF - 65KB)

This document provides a summary and outlines the 12 recommendations made by the IOM in July 2018 on returning individual research results to participants.

Community Engagement Studios: A Structured Approach to Obtaining Meaningful Input from Stakeholders to Inform Research

Engaging communities in research increases its relevance and may speed the translation of discoveries into improved health outcomes. Many researchers lack training to effectively engage stakeholders, whereas academic institutions lack infrastructure to support community engagement. In 2009, the Meharry-Vanderbilt Community-Engaged Research Core began testing novel approaches for community engagement, which led to the development of the Community Engagement Studio (CE Studio). This structured program facilitates project-specific input from community and patient stakeholders to enhance research design, implementation, and dissemination. Developers used a team approach to recruit and train stakeholders, prepare researchers to engage with stakeholders, and facilitate an in-person meeting with both. A tool kit was developed to replicate this model and to disseminate this approach.

MRCT Center Return of Individual Results to Participants Recommendations Document (PDF - 1.8MB)

This November 2017 report outlines the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard findings and recommendations on returning individual results to participants.

Patient vs. Community Engagement: Emerging Issues

The value proposition of including patients at each step of the research process is that patient perspectives and preferences can have a positive impact on both the science and the outcomes of comparative effectiveness research. How to accomplish engagement and the extent to which approaches to community engagement inform strategies for effective patient engagement need to be examined to address conducting and accelerating comparative effectiveness research. Participants developed and refined a framework that compares and contrasts features associated with patient and community engagement. Although patient and community engagement may share a similar approach to engagement based on trust and mutual benefit, there may be distinctive aspects that require a unique lexicon, strategies, tactics, and activities.