Community-Engaged Research—A path to more representative, efficient and impactful research in neurology

As neurologic disorders have emerged as a leading cause of death and a major threat to population health, the need to reduce risk, severity, and disability associated with these disorders has become more urgent.¹ Traditional research approaches, while appropriate for many research questions, have been slow to reduce many complex and pervasive neurologic health burdens. It is estimated that it takes 17 years for a basic science discovery to reach the public.² Although numerous interventions and practices have been shown to improve outcomes of neurologic diseases, their benefits have not been fully realized-- a challenge often described as the know-do gap.³ Evidence-based treatments, for example, such as acute stroke thrombolytics and epilepsy surgery, remain underutilized, and, more recently, uptake of anti-amyloid medications has been limited due to testing availability, specialist shortages, and delayed diagnosis.⁴ To achieve population-level health gains, research must not only identify new therapeutics but also ensure their successful implementation. Community-engaged research (CER) offers a promising approach to bridge this gap by enhancing representation, improving study design and conduct, and prioritizing implementation to more effectively translate findings into real-world neurologic impact for all.

What is Community-Engaged Research (CER)?

CER is a collaborative approach to research that involves constituents in the research process and recognizes the unique strengths that each brings. Members of community-academic partnerships are the constituents necessary to plan, conduct, and implement the outcomes of the research. The 7Ps Framework is commonly used to define categories of CER partners and includes: patients and the public (i.e., patients, caregivers, community members, and consumer advocacy organizations), providers (e.g., healthcare providers, community and faith-based organizations), purchasers (i.e., employers), payers (i.e., insurers), policymakers (i.e., government, regulatory body officials, funders), product makers (i.e., drug/device manufacturers), and principal investigators (i.e., academic researchers).⁵ Patients and families are authorities in the lived experience of illness, including the day-to-day realities and priorities that influence neurologic disease development, severity, and management. Providers are experts in delivering care, and payers/product-makers/policymakers are experts in the development of innovative products and policy change. Principal investigators are experts in the design and conduct of the research. Deciding which combination of partners is necessary depends on the specific research project.

Like any collaboration, the degree of power— control over valuable resources such as budgets or data – and status, influence within the team, that partners hold can vary across research projects. A common framework for levels of partner engagement (from least to most community power and influence) is: informed (community partners receive information from academic partners but have no power and influence over decisions), consulted (community partners provide intermittent feedback but have limited power and influence over decisions), involved (community partners provide more sustained feedback and have more power and influence over decisions), collaborating (community and academic partners share decision making power and influence), and empowered (community partners hold power and influence and academic partners provide support).

What is the value of CER?

CER can lead to more representative science, which enhances the external validity of research and promotes trust in research.⁶ For instance, community partners can provide insight into what motivates participants to enroll and stay in a study. This insight can inform recruitment site selection and guide the development of patient- or community-centered recruitment strategies, communications, and materials.

CER also has the potential to lead to more efficient research. Take clinical trials - the most powerful tool to evaluate the efficacy of interventions or treatments – as an illustrative example. Engaging patients, the public, and providers early on can elevate feasibility by providing critical insights that reduce enrollment delays, study attrition, and the need for later expensive protocol amendments. By understanding, from the onset of a trial, the demands on patients and the trial setting, trials can address logistical and procedural challenges that deter participation and better allocate resources to ensure timely completion and estimation of the costs critical for informing insurers and policy-makers. With the incorporation of the community's input, academic researchers may complete their studies faster, possibly even with larger effect sizes.

CER prioritizes implementation and dissemination and may, therefore, reduce the know-do gap.³ Developing and testing interventions with the people they are intended to benefit, in the settings where they will be implemented, helps address underlying factors that contribute to disparities in expected outcomes and allows key real-world challenges to be addressed early in the study design process. Partners can help shape a study design to fit within the constraints and capitalize on the advantages of the clinical and community services delivery system. For example, a stroke primary prevention trial is underway in partnership with individuals with hypertension, caregivers, community members, leaders of community-based organizations, providers from a safety-net Emergency Department (ED) and Federally Qualified Health Center (FQHC), and a local government representative. These partners have contributed to the research questions, participant recruitment, intervention design, and data collection. The trial leverages a strong referral network between the ED and FQHC—a key community asset—and is being conducted in the safety-net ED, where the intervention is ultimately intended to be scaled.

Community Partner's Perspective

For many communities, struggles with disabling neurologic diseases are a daily reality. People are suffering. Neurological conditions that affect a lot of low-income communities, such as dementia and stroke, are often underfunded and under-researched. CER ensures the research reflects the needs and priorities of the community and builds on community assets rather than being driven solely by institutional goals/scientific questions. CER gives people most affected, front-line providers, and decision-makers the chance to share their experiences and concerns. It also helps researchers to incorporate these lived truths into their studies, making the research more meaningful and likely to lead to concrete benefits. CER also builds on the work that community-based organizations are already doing creating innovation, enhancing community capacity, and ensuring that the progress achieved together is sustained. Many communities have not been asked, excluded from, or misrepresented in medical research, leading to mistrust and hesitation in participating in research and limited sustained improvements. By actively engaging community partners from the outset, trust can be built over time, fostering collaboration to address challenges and achieve sustained impact.

In conclusion, a CER approach is essential for improving representation, study design and conduct, and dissemination and implementation, ultimately leading to more impactful neurologic science. The COVID-19 pandemic showed that a successful vaccination program required not only biological effectiveness and streamlined logistics, but also comprehensive community engagement.⁷ The goal of improving the neurologic health of our communities is achievable, but it will take studies of high scientific merit, resources, infrastructure, and also a CER approach. To meet this need, explicit sustained community partnerships in research must be recognized as critical investments by partners, institutions, and funders alike. Meaningfully executed and fully supported, CER can be transformative: transforming the relationship between academic and community partners and generating sustainable solutions that reflect local knowledge, assets, and lived experiences, while generating answers to the questions most important to communities themselves.