In last month’s Annual Research Meeting (ARM) opening plenary, AcademyHealth CEO Lisa Simpson challenged the health services research (HSR) field to address its “weak spots” in order to achieve timely, real-world impact. The Paradigm Project is one way AcademyHealth has begun to rise to that challenge.
Over the last two years, volunteer “design teams” have worked to generate and test innovations in how we do or use HSR. Teams have leveraged the tools of human-centered design (HCD), an approach selected by project leadership because of its focus on the needs of people experiencing a given challenge and on generating innovations that are implemented in the real world.
In an ARM session, “Testing Innovations to Improve the Practice and Application of HSR: Lessons from the Paradigm Project,” members of the project’s design teams described innovations under development and shared lessons on three major challenges facing the HSR field: diversity, equity and inclusion (DEI); racial bias in big data; and meaningful partnerships with community-based organizations (CBOs). Panelists also reflected on the unique insights and achievements made possible by the use of HCD as the primary approach to the work.
Acting on DEI Needs in HSR
Dr. Alyce Adams of Stanford University reflected on her design team’s work to advance DEI in HSR. The team’s initial approach was that of any research project: reading about exemplars and diving into available data to understand DEI needs in HSR.
In 2020, the murder of George Floyd and subsequent events became a catalyst for approaching the work as a people issue instead of as a research project. The HCD approach was particularly appropriate in this moment, in that one of its key mindsets is a “bias toward action.” Dr. Adams observed that although researchers are unaccustomed to designing interventions without complete evidence, this discomfort disappeared for her team members once COVID-19 and the amplified Black Lives Matter movement highlighted the impact of the stories they were hearing.
Instead of collecting yet more data, they are now designing an event that pairs storytelling with action-planning, supplemented by an ongoing community for peer-to-peer support for people and organizations to make HSR environments more inclusive and welcoming.
Addressing Racial Bias in Big Data
Bina Patel Shrimali, a research manager at the Federal Reserve Bank of San Francisco, shared her experience as part of a design team addressing racial bias in research studies that utilize big data. Because big data capture the current state of an inherently biased world, researchers must actively counter this bias. For example, one algorithm widely used in the health care system to identify patients who would benefit from programs to care for people with complex medical needs relies on historical health care spending. Because Black people and white people have unequal access to care, the health system has historically spent less money caring for Black patients; as a result, Black patients need to be considerably sicker than white patients before the algorithm identifies them for the program.
To address such biases, the design team developed a build-your-own-adventure-style tool to help researchers identify and reduce racial bias at the different stages of their research. The tool prompts researchers with questions about their data sources and documentation, the origins of race/ethnicity data in their data sets, the rationale behind selecting proxy variables, and other study decisions—and provides guidance and tools for addressing gaps and communicating transparently about the limitations of their research. This tool is meant to spark discussion within research teams and, ultimately, further more equitable research.
Dr. Shrimali shared how the HCD approach also helped her team uncover blind spots and question long-standing practices in HSR more widely. For example, her team initially explored the Institutional Review Board (IRB) as the potential home for the racial bias tool. Over the course of a deep dive into the IRB origins and processes, they surfaced unexpected observations such as the gap between its original intent and how it functions today (serving human subjects vs. protecting institutions). This team’s efforts are also helping the field establish clearer frameworks that didn’t exist before to address issues of racial equity.
Building Meaningful Partnerships with Community-Based Organizations
In order to help the Paradigm Project question long-standing norms and disrupt the status quo in the field, project leadership intentionally recruited Learning Community members with a variety of perspectives. Jennifer Valenzuela is a social worker by training and is the Chief People and Equity Officer at Health Leads in Boston. While she was previously unfamiliar with HSR, it soon became clear that her perspective on community engagement would be critical to progress in the field.
In 2020, her design team merged with two other teams that were similarly focused on community engagement. They explored how collaborations between researchers and communities develop, identified three primary entities in these collaborations—researchers, community-based organizations (CBOs), and funders—and discussed a variety of barriers that often stifle collaboration.
The team is developing a tool to facilitate partnership-building around shared challenges with a focus on sustainability and equity. In recognition of substantial evidence that meaningful involvement of patients and community partners results in research that is more directly relevant and useful, the tool places community members in positions of leadership in the research partnerships and deliberately involves small CBOs that typically are left out of these partnership opportunities.
Adopting the “mindsets” of HCD was uniquely beneficial to the development of this partnership-building tool. The flexibility afforded by the approach enabled three design teams to align their efforts and seamlessly merge in response to the evolving needs of 2020, while still making relatively quick progress for a project of this scale. Finally, the heart of HCD is empathy, which emphasizes bringing new voices into the design process, especially individuals who may not feel part of the HSR community. This empowered the design team to center community organizations throughout their work and ultimately facilitate research that will have the greatest relevance and impact for patients and communities.
Looking Forward to Create Meaningful Change
Dr. Stephen Shortell, of the University of California, Berkeley, School of Public Health, reflected on both the growth of the HSR field and challenges in timeliness and impact that persist. He noted that, not unlike the Paradigm design teams, discrete silos in HSR need to come together in order to achieve greater impact.
Lessons and practices from the Paradigm Project that the field can leverage going forward include:
- Mapping the ecosystem of decision makers, understanding their decision-making processes and timelines;
- Partnering with a diverse set of stakeholders and clearly communicating the strategic value of collaboration; and
- Training students and researchers to engage with communities in order to be true changemakers.
AcademyHealth’s Paradigm Project is now evolving from a standalone project to a social movement that can empower the HSR community to drive change. AcademyHealth can support its sustainability by investing in infrastructure and systems to spur innovation, break down barriers, and strengthen facilitators to timely, impactful research. Learn more about the Paradigm Project here.