Engagement Science

At the root of structural issues is powerlessness. This primer examines how health equity can be achieved through a community power-building approach to structural change.

This work seeks to shift awareness and practice by centering racial equity and community voice within the context of data integration and use that supports power sharing and building across agencies and community members.

The chief research officer of the Seattle Indian Health Board is creating programs and databases that are not based on Western concepts to better serve indigenous communities.

Yeshimabeit Milner, founder and executive director of Data for Black Lives, calls for rejecting the concentration of Big Data in the hands of a few to challenge the structures that allow data to be wielded as a weapon of immense political influence.

This article highlights synergies between antiracist principles and community-based participatory research (CBPR), examines the potential for CBPR to promote antiracist research and praxis, illustrates structural barriers to antiracist CBPR praxis, and offers examples of CBPR actions taken to disrupt structural racism. It also provides recommendations for the next generation of antiracist CBPR.

This expert roundtable focuses on how the disaggregation of data, especially race and ethnicity data, can improve equity.

The Commission’s report and recommendations make it clear that in our current system, data on health inequities are divorced from the history and community conditions that shape poor health outcomes.

This review provides a characterization and conceptualization of community voice in health-oriented collaborations that provides a new theoretical basis for future research.

Increasing the accessibility of public and patient involvement (PPI) in health research for people from diverse backgrounds is important for ensuring all voices are heard and represented.

This guide was developed in response to librarians fielding multiple requests from UMN researchers looking to incorporate anti-racism into their research practices. This guide shares racist research systems and practices, followed by resources for mitigating those problematic systems and practices, but we wholeheartedly acknowledge that this guide is not a “solution” to the issues of racism embedded in research.

Drawing on field experience and scientific literature, we explore the connection between citizen science and Indigenous local knowledge and demonstrate approaches for how citizen science can generate useful knowledge while at the same time strengthening Indigenous local knowledge systems.

Background: Multiple factors, including experiences with unethical research practices, have made some Indigenous groups in the United States and Canada reticent to participate in potentially beneficial health-related research. Yet, Indigenous peoples have also expressed a willingness to participate in research when certain conditions related to the components of data management?including data collection, analysis, security and storage, sharing, dissemination, and withdrawal?are met. A scoping review was conducted to better understand the terms of data management employed in healthrelated research involving Indigenous communities in the United States and Canada. Methods: PubMed, Embase, PsychINFO, and Web of Science were searched using terms related to the populations and topics of interest. Results were screened and articles deemed eligible for inclusion were extracted for content on data management, community engagement, and community-level research governance. Results: The search strategy returned 734 articles. 31 total articles were extracted,
of which nine contained in-depth information on data management and underwent detailed extraction. All nine articles reported the development and implementation of data management tools, including research ethics codes, data-sharing agreements, and biobank access policies. These articles reported that communities were involved in activities and decisions related to data collection (n=7), data analysis (n=5), data-sharing (n=9), dissemination (n=7), withdrawal (n=4), and development of data management tools (n=9). The articles also reported that communities had full or shared ownership of (n=5), control over (n=9), access to (n=1), and possession of data (n=5). All nine articles discussed the role of community engagement in research and communitylevel research governance as means for aligning the terms of data management with the values, needs, and interests of communities. Conclusions: There is need for more research and improved reporting on data management in health-related research involving Indigenous peoples in the United States and Canada. Findings from this review can provide guidance for the identification of data management terms and practices that may be acceptable to Indigenous communities considering participation in health-related research.

For this follow-up volume, Do No Harm Guide: Additional Perspectives on Data Equity, we handed the pen to data experts and practitioners whose voices have been traditionally underrepresented.

In this guide and its associated toolkits, we focus on how data practitioners can approach their work through a lens of diversity, equity, and inclusion to encourage thoughtfulness in how analysts work with and present their data.

Dr. Ponce discusses how she devised the rationale and implementation of Asian ethnic oversamples, and the cultural and linguistic adaptation of the CHIS survey in Chinese, Korean, Vietnamese, and Tagalog.

The COVID-19 pandemic has inequitably impacted Indigenous communities in the United States. In this emergency state that highlighted existing inadequacies in US government and tribal public health infrastructures, many tribal nations contracted with commercial entities and other organization types to conduct rapid diagnostic and antibody testing, often based on proprietary technologies specific to the novel pathogen. They also partnered with public-private enterprises on clinical trials to further the development of vaccines. Indigenous people contributed biological samples for assessment and, in many cases, broadly consented for indefinite use for future genomics research. A concern is that the need for crisis aid may have placed Indigenous communities in a position to forego critical review of data use agreements by tribal research governances. In effect, tribal nations were placed in the unenviable position of trading short-term public health assistance for long-term, unrestricted access to Indigenous genomes that may disempower future tribal sovereignties over community members’ data. Diagnostic testing, specimen collection, and vaccine research is ongoing; thus, our aim is to outline pathways to trust that center current and future equitable relationship-building between tribal entities and public-private interests. These pathways can be utilized to increase Indigenous communities’ trust of external partners and share understanding of expectations for and execution of data protections. We discuss how to navigate genomic-based data use agreements in the context of pathogen genomics. While we focus on US tribal nations, Indigenous genomic data sovereignties relate to global Indigenous nations regardless of colonial government recognition.

The philanthropic & nonprofit fields, organizations & individuals have shown an increasing focus on equity. This booklet shares five scenarios around equity in which we?ve had to clarify our role & form an appropriate response.

This article examines what it means to use equity as a guiding principle throughout the components and functions of a modern public health data system.

This commentary will interrogate the ways we as health services researchers pose our research questions, create methodological approaches, and interpret our findings, and serve as a disciplinary self-critique that will expose how our disciplinary practices are steeped in white supremacy.

Collaborative research networks are increasingly used as an effective mechanism for accelerating knowledge transfer into policy and practice. This paper explored the characteristics and collaborative learning approaches of nine health research networks.

This guidance is meant to facilitate conversations between researchers and patient partners about authorship and/or acknowledgement regarding research projects on which they collaborate.

ASTHO?s Health Equity toolkit is part of this work, to help public health leaders navigate the policy process and address health inequities by building diverse and inclusive coalitions. Tools discussed in this guide are designed to support a wide range of policy changes that can promote health equity.

This paper explores the rise & consequences of ?health equity tourism?, a phenomenon where previously unengaged investigators pivot into health equity research without developing the necessary scientific expertise for high-quality work.

This resource is intended to provide state policymakers with a suite of state approaches to address health disparities ? from targeted to cross-agency comprehensive strategies. Each section below comprises best practices and state
examples from a geographically diverse set of states to guide state policymakers to the opportunity that best suits their states? needs and capacity. Also included is a lexicon, recognizing the importance of common definitions in this domain, along with links to key tools and resources.

This expert roundtable focuses on how the COVID-19 pandemic brought to light the serious and pervasive data gaps facing marginalized groups and what cross-cutting themes the panels found in their work.

Public research funding agencies and research organisations are increasingly accountable for the wider impacts of the research they support. While research impact assessment (RIA) frameworks and tools exist, little is known and shared of how these organisations implement RIA activities in practice.

Racial and ethnic health disparities have been documented in the United States for over a century. In 1985 the Heckler Report provided the first national summary of these disparities, leading to the creation of the Department of Health and Human Services Office of Minority Health. In the 1990s and 2000s the study of gaps in health care access, utilization, and outcomes by race and ethnicity grew rapidly, but confronted a critical limitation of the available data: the lack of standardized, self-identified race and ethnicity. The COVID-19 pandemic provided stark proof that data limitations are far from being addressed, which has real consequences for the study and practice of public health. Though data have improved since the beginning of the pandemic, the Centers for Disease Control and Prevention can only identify the race and ethnicity of less than 60% of individuals testing positive for COVID-19 or receiving vaccines, significantly limiting the ability of policymakers and health care stakeholders to measure and improve equity in the pandemic?s effects and mitigation. This Roadmap builds on an earlier report, Federal Action Is Needed to Improve Race and Ethnicity Data in Health Programs,1 in three critical respects. First, it expands on that report?s summary of the current state of race and ethnicity data in health care programs, offering more detail about whether and how race and ethnicity data are collected across a range of insurance programs, federally administered health systems and public health databases. Second, it summarizes a range of barriers to improving collection and use of race and ethnicity data, and identifies general principles for improving the data. Finally, it expands the range of recommendations for improving the data, considering not only actions the federal government could take, but also identifying actions for states and the private sector. To advance these goals, the project team carried out a targeted search for information on the completeness and quality of race and ethnicity data; an environmental scan to identify previous reports summarizing challenges to collection and use of race and ethnicity data; and key informant interviews to better define and understand barriers and opportunities. The environmental scan and informant interviews pointed to a consistent set of barriers faced by health care organizations, including: (1) Legal and privacy concerns around collection and use of race and ethnicity data. (2) Lack of standardized collection procedures and category definitions. (3) Technical barriers to collection and storage of data. (4) Cost of collection and lack of financial incentives or program requirements to collect race and ethnicity data. (5) Lack of staff and resources in health care organizations to analyze and use data once collected. (6) Resistance from patients and clinical providers to collection and use of race and ethnicity data. Despite these challenges, prior reports and data from the key informant interviews pointed to several opportunities to improve collection and use of race and ethnicity data: (1) Highlight early, successful adopters of expanded race and ethnicity data collection. (2) Disseminate existing technical support resources and data standards. (3) Educate patients and providers about the potential of improved race and ethnicity data to improve outcomes and equity. (4) Provide incentives to encourage data collection and finance necessary technology investments and staffing. (5) Where incentives fail to produce action, consider mandates (e.g., require collection to meet certain standards as a condition of participating in federal programs or demonstration projects). (6) Identify existing resources that could be leveraged to improve analysis of health equity until consistent, complete, self-reported race and ethnicity data are available. The report concludes with a series of recommendations for federal and state regulators and legislators, health systems and health insurance companies, and a range of other health sector stakeholders. Recommendations are grouped under the following themes: (1) Improve data collection, storage and transfer systems. (2) Evaluate and expand incentives and requirements to collect. (3) Provide updated technical assistance to stakeholders. (4) Review, clarify and, if necessary, amend regulations.

This article highlights methodological approaches that will move the field forward in its ability to validly measure structural racism for the purposes of achieving health equity

This tool describes how to conduct intensive equity assessments of existing programs, policies, and processes. The tool first describes the scoping work that needs to be done before conducting an equity assessment and then describes and provides guiding questions for each of the six steps in the in-depth equity assessment process.

Lotteries, self-review, open peer review, innovation prizes, and other approaches have emerged as potential research funding process alternatives, but each of these options comes with its own advantages and disadvantages.

This commentary uses Black Feminism and Womanism (BFW) as epistemologies to critically address Black women’s health policy, building on the legacy of Black women’s experiences, theories, & knowledge production.

Despite decades of research exposing health disparities between populations and communities in the US, health equity goals remain largely unfulfilled. We argue these failures call for applying an equity lens in the way we approach data systems, from collection and analysis to interpretation and distribution. Hence, health equity requires data equity. There is notable federal interest in policy changes and federal investments to improve health equity. With this, we outline the opportunities to align these health equity goals with data equity by improving the way communities are engaged and how population data are collected, analyzed, interpreted, made accessible, and distributed. Policy priority areas for data equity include increasing the use of disaggregated data, increasing the use of currently underused federal data, building capacity for equity assessments, developing partnerships between government and community, and increasing data
accountability to the public.

This brief introduces the Belmont Report?s principles and provides selected principle-aligned practices and resources to help data experts at all levels integrate the principles into their work and move toward more equitable data practice.

Critical appraisal tools developed by First Nations peoples are available to researchers and direct attention to the social, cultural, political and human rights basis of health research.

Beyond simply acknowledging the diversity of possible formats, attention must also be paid to visualisations? rhetorical capacity to convey arguments and ideas and motivate particular audiences in specific situations. This paper seeks to address this gap by analysing both the approaches and methods of argumentation used in two visual public engagement campaigns

A Racial Equity Impact Assessment (REIA) is a systematic examination of how different racial and ethnic groups will likely be affected by a proposed action or decision.

The Commission’s report and recommendations make it clear that in our current system, data on health inequities are divorced from the history and community conditions that shape poor health outcomes.

The current evaluation paradigm must shift and mindsets and practices evolve. The Equitable Evaluation Initiative’s Equitable Evaluation Framework provides principles and orthodoxies to guide organizations.

Our aim is to lay the groundwork for an ethically responsible development of AI in the domains of health research, clinical practice and public health.

In this episode, Dr. Brownsyne Tucker Edmonds and Dr. Sylk Sotto talk with Dr. Aaron Carroll about the importance of diversity and equity in research, higher education, and medicine.

Using a blend of personal narrative and insights from a 23-year career as a Black critical health equity researcher, I share 10 critical lessons for Black and other health equity researchers of color.

We provide recommendations on how to implement systems-level change and educational reform to infuse racial equity in future policy and practice for Asian American communities.

This content was initially created to inform federal staff at the U.S. Department of Health and Human Services. In an effort to increase collaboration and share promising practices, the Office of the Assistant Secretary for Planning and Evaluation has made this tool available for both public and private partners.

The report highlights major lessons from the Building Healthy Communities initiative that contribute knowledge to philanthropy and to the on-going racial justice and health equity movement in California and the nation

This Implementation Guidebook will help individuals, organizations, communities and First Nations in planning, implementing and evaluating the W.K. Kellogg Foundation’s Truth, Racial Healing & Transformation efforts.

As 14 Truth, Racial Healing & Transformation places approach the fourth year of implementation, these briefs offer a glimpse into the opportunities, nuances & complexities of implementing a community-based collaboration.

Abdul Shaikh facilitates a discussion on emerging methods to advance health equity. Lisa Goldman Rosas presents on community-based participatory research, and Suzanne Tamang discusses how using big data can improve outcomes.

Derek Griffith draws on his experience developing strategies to improve Black men?s health and to achieve racial, ethnic and gender equity in health to reflect on future directions for health equity research.

In 2021, Fund for Shared Insight launched a participatory grantmaking initiative exploring power-sharing around the decisions funders make in supporting advocacy and policy work aimed at issues of climate change and environmental justice.

This study provides a recommended ?patient engagement translation table? that identifies evidence-based methods for meaningful patient engagement along a ten-step framework for continuous engagement.

This guidebook proposes an equity-based approach as a way to restore communities as the true authors and owners of research, and to shift the way researchers and funders work with community-based organizations to uncover knowledge together.