Building a Public Health Data System that Shifts the Narrative and Amplifies Community Voice: An Interview with Michael Crawford of Howard University

In 2021, the National Commission to Transform Public Health Data Systems issued its recommendations for creating a modern public health data system centered on health equity. In just over two years, the public health data landscape is changing significantly. Here, Gail C. Christopher, D.N., who chaired the Commission and is executive director of the National Collaborative for Health Equity, interviews Commission member Michael Crawford, who is tuned into many of these changes across sectors. Mr. Crawford is the assistant vice president for strategy and innovation at Howard University Office of Health Affairs and founder and executive director of Howard University’s 1867 Health Innovations Project. He was formerly chief of staff at Unity Health Care, Inc., one of the largest health center networks in the U.S.

Q: The Commission called for building a public health data system that can shift the narrative to one that is positively oriented and equity based—for example, from deficit to strength, from oppressive to restorative. Can you provide examples of efforts that align with this recommendation?

A: The only way that we can do that is to disaggregate data so that we can look more deeply at different racial and ethnic groups. For example, if you look at the Hispanic population in the aggregate, those data don’t tell the stories of all the different ethnic groups within the aggregate, and you need to have that level of understanding to see how different groups are experiencing disease.

Some entrepreneurs are tackling this challenge from a digital health standpoint. They are also looking at how to provide information to different groups and communities across the country and around the globe—and how to do so in a way that is culturally sensitive to and informed by the needs of each community. They have apps that allow direct communication with communities to capture data that provide a full picture of what’s happening in these communities.?

Here’s another example. We often hear that people in particular communities don’t want to participate in clinical trials for various reasons. At Howard, we are engaging with entrepreneurs who are creating digital health tools to form micro-communities across geographies, race, ethnicity, gender, disability, etc., to better understand clinical trial participation at the community level. They are using this information to address historical narratives related to peoples’ decisions to participate in clinical trials. Ultimately, these entrepreneurs are hoping that their solutions will help increase participation in clinical trials so that we have new drugs and therapies that work for all communities—not just some.

Q: That’s a powerful illustration of how these stories matter—authentic lived experiences that can be gleaned from data that the communities themselves provide and report. You’re in a unique position to have an authentic relationship with diverse communities in your role at Howard University. What kind of work are you involved with there to change the narrative?

A: Artificial intelligence is a pressing issue right now. When we think about AI, we think about the power of data, the power of algorithms, and the power of this new technology to transform society and culture, as well as the way in which we interpret and process data to make informed decisions. But we often miss the fact that AI is powered by data, and if we don’t have the right data sets that fully reflect the health needs of all communities, AI could exacerbate the same health inequities that exist in the non-digital world.

We are working across sectors to ensure that folks understand the importance of getting this right from the outset, so that, when you develop an algorithm, you are fully considering the pros and cons for all communities. We need to make sure that we have the proper guardrails in place to ensure everyone benefits equitably from AI. From a healthcare perspective, we need to ensure that both the public and private sectors understand the pros and cons of AI and that we’re fully considering the needs of all communities.

In another example, the public and private sector are transitioning the vast majority of their recruitment efforts online. You are filling out online forms throughout the recruitment process and AI powered tools are determining if you are moved to the next phase of the process. Again, if we don’t have the right data and knowledge that allow all individuals to compete for jobs equitably, we will perpetuate some of the same biases that occur in the non-digital world, leading to lost opportunity for job applicants, especially communities of color. We have to get this right so that everyone has a fair opportunity to compete for good jobs across all sectors.

Q: That’s a nice segue to the wonderful Digital HealthEx summit you held at Howard with leaders from a range of sectors, including the tech industry, healthcare, and government, to discuss digital health equity. What was one key takeaway you gleaned from those discussions?

A: What I hear consistently from digital health leaders and stakeholders is "it is important to bring health stakeholders to understand the interconnectedness of the digital health ecosystem" in terms of promoting a more digitally inclusive society. Technology has the potential to impact health and wellbeing at such a significant level, and all these nuanced conversations and connections can have a large impact. Leaders and health stakeholders are starting to think differently about the problem and how their sector can contribute, partner, and collaborate to develop intentional solutions to solve these problems. The future of health is digital, and we need to ensure that we're not leaving anyone behind in the digital space.

Q: There was an interesting panel discussion on digital health’s role in health and housing. Can you tell us more about that?

A: The home is the next frontier of health, and we need to think about how people will receive healthcare in their homes from an Internet of things (IoT) perspective that includes all elements of the connected home, such as televisions to their refrigerators to their lighting. We need to think about how? these connected devices can be leveraged to offer personalized insights regarding how people live and behave in their homes, and then how? technology can help influence healthy decisions and behavior change.

In doing this, we need to think about the relationship between housing and technology for all income levels, not just high and middle incomes, but public housing and low-income housing as well. We also must ensure that everyone has access to Wi-Fi and broadband service to facilitate reliable access to digital health tools.?

Q: Stepping back, what policies or best practices can practitioners and community-based organizations reference to make digital health information and data more accessible to everyone?

A: The White House has come out with an executive order on artificial intelligence that has a number of recommendations pertaining to algorithms, data capture, transparency, and accountability that can be used to better understand the rapidly expanding field of AI.

Q: One of the themes the Commission focused on was how to engage communities in data and equity work. How can we involve community members and elevate community voice, particularly around data and digital health?

A: You need to be transparent and authentic about your partnership intentions with the community, and, conversely, the community must have the information, the skill sets, the data, and the capacity to engage with industry in an effective and sustainable way. Often, industry provides a community-based organization with a grant, but does not fully consider the human capital and infrastructure investments required to implement the grant and provide comprehensive reporting. So, the organization must be properly equipped and resourced to do the work, and the grant commitment should be multi-year to establish the appropriate infrastructure to execute the work plan.

At Howard, we have been engaged in several clinical pilot projects where we have served as a conduit between industry, entrepreneurs, patients, and providers. This opportunity has allowed us to create a platform to elevate the voice of patients and the community regarding patient-informed technology design. We develop clinical pilot projects for different medical conditions—like diabetes or high blood pressure—and we introduce the technology to the patients and capture quantitative and qualitative patient feedback over the course of the pilot period, which helps us improve current and future technologies for broader community adoption. We're conducting these pilots at a micro level, but we believe we could scale to a macro level with the right partners.?

Q: From your position at one of the nation’s premier historically Black universities, what role do you think academic institutions should play in helping to change the narrative??

A: Howard University is the only historically Black college or university with a hospital and robust outpatient practice. We have served as a health provider, convener, an advocate, and a surrogate for communities around the globe in terms of engaging both the public and private sectors in addressing intractable community health challenges.?

In addition, we are helping to shape the workforce, which is critical to innovation, by making sure that our students have internships, externships, and fellowships at leading organizations across the globe.

And thirdly, we are constantly offering thought leadership on topics related to health equity. For example, we are part of a National Institutes of Health effort on AI where we are offering education to the community. We are looking at ways to explain AI from a narrative perspective, to make sure that all communities understand the power of AI, and that they have the language and nomenclature to talk fluently about AI and community needs. That is merely one example from an academic perspective of how we are engaging forward leaning technology discussions.?

Q: My final question: Given the polarization, the politicalization, and the economic challenges that we face nationally, what gives you hope? What are your sources of optimism in these challenging times for building a digitally inclusive health ecosystem that benefits everyone?

A: I am optimistic. The reason I’m optimistic is because of the people I regularly engage with: entrepreneurs, our students, and some of the young professionals who will lead this effort in the future. Their hope, their energy, and their optimism allow me to envision a better future for all communities. Will it happen overnight? No, I think it will be like running a marathon, and each generation will run its race and then hand the baton to the next generation to carry the race forward. At the moment, health equity and digital health equity engagement is high amongst healthcare leaders. Health equity has become a strategic imperative for leading health organizations and government, and I believe that we will continue to make positive strides in the digital health space with respect to closing the health disparities gap that has disproportionately impacted Black, Latino, and other communities for too long.