Shifting the Narrative Towards Research Equity

By Alexander Perez
November 19, 2020

In the era of End the HIV Epidemic (EHE) initiatives, the use of Evidence-Based (EB) and Evidence-Informed (EI) approaches remains at the forefront of conversations, yet many communities most in need remain unreached. The Centers for Disease Control and Prevention (CDC) describes EB approaches as those which provide the strongest evidence of efficacy based on rigorous evaluation, while EI approaches have evidence of effectiveness but may require further study. These approaches are based on a stringent set of criteria that evaluate the results of experimental studies and how those outcomes may be effectively applied in the real world. Rigorous study designs to assess intervention effectiveness remain the standard for determining the evidence of new approaches for engagement and retention in HIV care. However, the rigor required may exclude other innovative approaches observed to be effective at engaging the most impacted communities in real-world settings.

As the gold standard for evidence determination, EB/EI approaches have been invaluable in improving the lives of people with HIV (PWH) on a global scale, yet the rigor employed by these standards has created a biased feedback loop in contemporary thinking around “innovative” practices. Evaluating approaches through an EB/EI lens assumes that institutions have the analytic capacity to meet the rigorous parameters required for this level of effectiveness. Assumptions like these reinforce several underlying biases about how “credible” knowledge is created, ultimately favoring those institutions which are well funded, staffed, and connected. EB/EI approaches are typically identified via the rigor of their research design and outcomes, which can be very costly to implement and difficult to coordinate without well-trained personnel. This inherently leaves out organizations with limited resources that are positioned at the front lines of public health responses, like grassroot programs and community-based organizations (CBOs). In many circumstances, these organizations have utilized novel approaches and documented positive outcomes in clients but do not have an opportunity to clean, consolidate, analyze, and report their findings. Bias like this reinforces existing power dynamics held by institutions like universities and hospitals, creating a narrow avenue for knowledge creation and hindering innovative progress through recycled frameworks.

This type of dynamic also reinforces the idea that only those approaches with outcomes that meet EB/EI parameters are worth considering. Although these approaches have proven to be critical tools in our response to HIV, reaching the most impacted and achieving EHE goals requires an expansion in our thinking around “effectivity.” Statistical significance remains a cornerstone parameter for outcomes measured through an EB/EI lens but limiting our understanding of effectivity strictly to inferential metrics like p-values, confidence intervals, and effect sizes may prove counterproductive to achieving true innovation. The use of less traditional forms of evaluation, such as anecdotal evidence or clinical relevance and outcomes, becomes an imperative addition to our public health toolbox if we are to truly address client barriers in unique and effective ways. Incorporating less stringent evaluation methods organically imbeds the voices of CBOs and grassroots programs that may already have a rich repository of data from approaches that have improved the lives of those they serve. An inability or unwillingness to leverage this information for use by wider audiences creates a severe gap in true innovation and hinders our efforts to improve the lives of PWH.

It is urgent that strategies to meet EHE initiatives and improve health outcomes for PWH intentionally address these gaps to develop truly innovative approaches. Public health researchers and stakeholders are uniquely positioned to address these gaps using health equity frameworks. Developing approaches using an equity framework begins by considering the background and biases inherent to the groups leading the development, which means identifying power hierarchies, oppressive value systems, and institutionalized discrimination that organically contribute to inequities in research. A similar lens needs to be applied to ensure that privilege and positionality are used to increase communities’ access to ongoing research funding, challenge narratives in scopes of work which may reinforce inequities, and incorporate community leaders in the development and dissemination of funding opportunities. These ideas should also extend into the research process itself in which researchers challenge the prioritization of outcomes based solely on statistical significance, consider diverse data collection processes (e.g., storytelling, focus groups, clinical outcomes, etc.) and make visible the historical context in which studies operate as a way of allowing for appropriate interpretation of findings. Ultimately, a true equity framework can only be achieved through meaningful community engagement in each step of the knowledge creation process. This includes the prioritization of relationship building, ensuring diversity on research teams (especially in leadership roles), compensating communities for their efforts in equitable ways, and letting communities lead the dissemination and interpretation of data relevant to them.

Our efforts as public health practitioners, researchers, and allied professionals need to remain dynamic if we are to address health inequities using truly innovative approaches. NASTAD’s Center for Innovation and Engagement (CIE) has worked diligently to identify biases in our own research practices and partnered with health departments, CBOs, and other community-centered organizations to help build their capacity to meet EB/EI standards. These efforts will offer a roadmap for organizations to build their capacity to meet rigorous scientific standards rooted in equity principles to reach the most impacted communities. Through continued advocacy, discussion, and centering of community voices we are sure to build frameworks that are truly unique to help us meet the attainable goal of ending the HIV epidemic.