Academic institutions, government and private funders, scientists and communities are increasingly recognizing the benefits of engaging patients, caregivers, health care providers, community- and faith-based organizations, community residents and policymakers in research. Engagement offers a promising approach for ensuring the research and interventions are culturally sensitive and responsive to community needs, as well as increasing the likelihood of generating meaningful and sustainable results. Engagement can also improve research outcomes by helping to avoid common pitfalls that can cause projects to fail (e.g. low enrollment, low intervention fidelity, etc.). Increasingly, engagement is recognized as necessary for translating existing research to implement and sustain new health promotion programs, change clinical practice, improve population health and reduce health disparities.
This document provides a series of key considerations related to incorporating engagement into different phases of a research project: (1) Getting Started, (2) Implementation, (3) Dissemination. These key considerations are intended to be useful regardless of the type and amount of engagement a research project uses. The document is also intended to be a resource for researchers who are preparing grant applications that require or suggest patient/community/stakeholder engagement. Addressing these key considerations in grant applications illustrates an understanding of fundamental issues related to engagement that are emphasized by reviewers/study sections.
We encourage you to follow-up with staff or faculty at Northwestern University’s Center for Community Health for clarification on any of the recommendations found in this document or for consultation on how to put these recommendations into practice. You may also find some useful resources on the websites below.
Susan LeBailly, Director, Practice-Based Research (PBR) Program: firstname.lastname@example.org
Darius Tandon, Associate Director, Center for Community Health (CCH): email@example.com
Click here for PDF document of the full Key for Considerations/FAQs document.
What type of engagement do we need for our project?
Who are the groups or people we are trying to engage?
How should we prepare for our first connection/meeting with potential partners?
How should we coninue to establish and develop our partnership?
How can we engage partners in developing research questions?
How can we engage partners in the design of our project?
How can we engage partners in proposal development? How do we describe the engaged proposal development process in our grant proposal?
How can we continue to support our partners while we are waiting to hear about the fundng decision?
What are things our project needs to consider from the beginning?
How can we engage partners in data collection efforts?
How can we engage partners in recruitment and retention of study participants?
How can we engage partners in data analysis?
How can we maintain strong partnerships during the implementation of a research project?
How do we handle dynamics among different community stakeholders who are working with us?
How do we build benefits for community stakeholders who are working with us?
How do we think about the sustainability of programs created through the partnership?
Discuss preliminary dissemination plans with your community partners. What kind of information do they need to obtain from the project? What value does the study provide to their organization? Have these conversations as early as the start of the project so you can insure that you are collecting the data necessary to address the community needs for information.
Once you identify the study results, consider the following.
Consider dissemination venues or mechanisms relevant for your stakeholder groups.
When crafting dissemination, what are some key considerations?
What are the next steps?
Address financial/staffing changes.
Consider whether the relationships should continue after the projects ends.