More Robust
Community Engagement
Frameworks

In the last decade, there has been an increasing level of scrutiny over patient engagement in research, and interest in shifting to co-creation.

Yet, the use of “co-creation” (e.g. the term itself) most often describes the employment of “strategies such as consultation, involvement, partnership, and shared leadership,” not full control. Indeed, it is rare for people with lived experience in a particular health research area to be the primary research leaders on the projects that concern and directly impact them, and not simply the engaged patient population. This is true throughout the entirety of a project’s lifecycle, from problem identification to implementation and knowledge translation. 


This project is a 4-phase, exploratory sequential research endeavor, attempting to answer the following questions:

  1. What are the different types of patient/community engagement methodologies used for and in health research projects?

  2. What, if anything, are the noted differences between or unique aspects among these methodologies (in regards to concrete practices, approaches, tools, strategies, and/or techniques), as described by and/or explicitly used by researchers and research teams?

  3. How and in what ways do these methodologies, if at all, support and promote genuine patient engagement and lived experience leadership?


Click to learn more about each Phase:

  • This qualitative evidence synthesis will query MEDLINE/PubMed, PsycINFO, Web of Science, Scopus, Ingenta, Science Direct, Cochrane, Campbell Collaboration, CINAHL, VCU Library, Overton, and Google Scholar.

    Using PCORI’s five domains of engagement in health research as an initial framework, we will assess the context, activities, quality, and partner and near-term outcomes of the engagement methodologies present in the articles we discover, including: partner representativeness, pre-engagement trust, barriers and facilitators, level of engagement, facilitation of diverse perspectives/views, trust (pre/during/post), sustainability, efficacy and study completion, patient-centeredness, and diverse participation.

    Building on these measures of engagement, we will also assess each article for the quality and success of lived experience leadership within these research methodologies and their approaches using the 100  Million Healthier Lives’ Engaging People with Lived Experience of Inequity Assessment Tool. The areas of assessment include: lived experience, process, co-design, co-leading, resources, power dynamics, voice (ensuring that everyone’s voice is heard), value (ensuring that everyone’s value is recognized), social capital (people, resources, power, knowledge), ownership, and equity.

    OSF Pre-registration with full study documentation details forthcoming.

  • A Delphi Study will assess what specific strategies, tools and tactics community engaged researchers identify as necessary to ensure genuine study accessibility and encourage the meaningful engagement of community members in health research, as well as the facilitating factors and/or barriers to these strategies’ use in current practice.

    Delphi methods are particularly well-suited to effectively and efficiently gather and synthesize complex knowledge across disciplinary areas and facilitate collective consensus-building. The asynchronous iterative Delphi process of collecting data through a series of “rounds”, each new round sharing the results from the previous round, allows participants to adapt their own opinions based on the views of and information shared by the others. Because the process is conducted anonymously, direct confrontation, hierarchical posturing and deference are minimized. Unlike literature or environmental reviews, which represent only published information and rely on the information synthesis of few researchers, Delphi methods allow us to draw on the most current expert knowledge of people who are less likely to be represented in formal academic institutions.

    We hope to launch the Delphi Study in Fall 2026.

  • We will conduct Community Engagement (CE) Studios with 18-24 community experts to refine and expand the consensus ranked list of engagement strategies, tools and tactics identified and synthesized in Phases 1-2. The CE Studio process will address three key questions: 1) where are there gaps in strategies, techniques, barriers, and/or facilitators; 2) where is there agreement and disagreement with the strategies, barriers, and facilitators identified by Delphi experts; and 3) how we can best translate these strategies into research practice?

    CE Studios are an approach to engaging community members in the development and refinement of research projects. Unlike focus groups, which are usually one-time events to collect data from subjects, CE Studios are multi-session dialogues with consultants, designed to provide guidance on the research process based on lived experience and knowledge. Projects using long-term and consistent CE Studios have had great success in improving the quality, relevance and feasibility of research and enhancing public participation in research.

    For the third core question (where do we go from here), we will also utilize Concept Mapping (CM). CM is a validated mixed-methods approach that can identify and describe constructs relevant to a population when extant information is scant. Compared to quantitative or qualitative research alone, CM is a valuable research strategy that provides “an efficient way to generate an interpretable conceptual framework that is developed in the language of participating” community members.

    We tentatively plan to hold our CE Studio sessions in early/mid 2027, pending funding.

    The resulting framework for implementing meaningful engagement strategies will be piloted and testing in a gender and sexual health prevention and early intervention project, described below.

  • We will measure the robustness, usability, acceptability, and efficacy of engagement using the framework that emerges at the end of Phase 3, in a pilot study that works to develop a gender and sexual health prevention and early intervention program. You can find more details about that planned project on it’s own research project page here.

    The pilot project is tentatively planned to run from 2028-2031, pending funding.