HDG #019: The #1 mistake when creating new health equity programs
Read time: 4 minutes
Greetings, Changemakers! This week we’re highlighting the #1 mistake that people make when designing new health equity or community improvement programs. It’s an easy one to make, but a VERY hard one to consistently address.
So, what is that mistake?
Well... it’s quite simple.
We don’t invite the very people who we're designing these initiatives for to participate in the ideation process.
In other words, the people we’re designing programs for aren’t present in the design or input process at all.
And when it comes to health equity, this is a major issue given the nature of the issues we’re trying to tackle. Health equity isn't merely a top-down mission. It requires a bottom-up approach, an embrace of the community health worker's wisdom, prioritizing the voice of the customer, and a true desire to hear the authentic stories of those we’re trying to help.
Tell me if this situation sounds familiar:
A shiny new program is conceived by and unveiled from the top echelons. It sounds great, it is very aspirational and inspirational. It was possibly even indicated by the data. But upon announcing it, you’re met with groans from those out there on the front lines doing the hands-on work with patients, community residents, or health plan members. And it’s because they know (sometimes, painfully so) that these theories don't easily translate to reality. They hear and see it firsthand. So the initiative struggles to gain the buy-in and traction that it deserves. It then shows no results or ROI, and is retired or limps along.
This isn't a novel revelation, but there's a growing recognition that we need the voices of the very people we’re trying to help around the table more than ever.
This tweet from this guy I don’t know sums it up well:
And what can we do about it?
There's a growing—or perhaps renewed—awareness of the critical gap we need to bridge. This is where the idea of community-based participatory research (CBPR) gains ground.
Community-based participatory research is a collaborative research approach that involves the active participation and engagement of community members, researchers, and other stakeholders throughout the entire research process. It aims to address social, health, or environmental issues in a way that empowers the community, promotes mutual learning, and leads to sustainable solutions. CBPR seeks to bridge the gap between researchers and the community by valuing and integrating the knowledge, experiences, and perspectives of all involved parties.
The idea of community-based participatory research has been around for a while, serving as a collaborative approach to research that equitably involves all partners.
CBPR has been widely adopted in various fields, including public health, social sciences, environmental studies, and community development, to create more inclusive and socially relevant research that addresses complex societal challenges. By actively involving communities in the research process, CBPR fosters a sense of ownership and fosters the potential for long-lasting positive impact.
Key features of community-based participatory research include:
Collaboration and partnership: CBPR emphasizes building strong partnerships between researchers and community members. It recognizes that both groups bring unique expertise and experiences to the table, and their combined efforts can lead to more meaningful and impactful research outcomes.
Equitable involvement: CBPR strives to ensure that all stakeholders are actively involved in the research process, from identifying research questions and designing the study to data collection, analysis, interpretation, and dissemination of findings. This approach helps prevent the exploitation of the community and promotes equitable decision-making.
Community empowerment: CBPR aims to empower the community by involving them in decisions that directly affect their lives. By engaging community members as co-researchers, the research process becomes more relevant and responsive to the community's needs and aspirations.
Addressing social determinants: CBPR often focuses on social determinants of health or other social issues. It recognizes that health and well-being are influenced not only by individual factors but also by broader social, economic, and environmental contexts.
Capacity building: CBPR seeks to strengthen the capacity of the community, including individuals and organizations, to actively participate in the research process. This includes providing training, resources, and support for community members to take on meaningful roles in the research.
Impact and action-oriented: CBPR is driven by a desire to produce actionable results that can lead to positive change in the community. The research findings are intended to inform policy, practice, and community-based interventions.
Reflexivity and cultural humility: CBPR encourages researchers to reflect on their own assumptions, biases, and power dynamics in the research process. Cultural humility involves recognizing and respecting diverse cultural backgrounds and acknowledging that researchers may not have all the answers or understanding of a community's experiences.
CBPR is a collaborative approach to research and program design that equitably involves all partners—researchers, community members, and organizational representatives—in the process.
The stakeholders participate in the full spectrum of the project, from establishing the questions to disseminating the results. By doing so, CBPR increases the value of the study or program by ensuring it is culturally appropriate, effective, and sustainable within the community.
But if you do include more people, is it tokenism or genuine co-creation?
I can’t take credit for this question, or even the idea for this edition. It was raised by a public health professional/university professor I was recently talking to, but I thought it was timely.
Tokenism, in this context, refers to the superficial display of inclusion, where voices from the community are present but not truly heard or empowered. In contrast, genuine co-creation emphasizes an equal partnership, where community input is actively sought, respected, and integrated into the decision-making process
If we're earnest about achieving health equity, co-creation isn't a mere option; it's the ideal foundation of our work. We need to recognize that those who are living with the challenges we seek to address are often privy to the most effective solutions. They live the reality we're attempting to model in our datasets, comprehending the intricacies that may escape our observation.
Of course, data remains crucial. It allows us to identify patterns, to make educated decisions, to measure outcomes. But data without context of the lived experience can lead to misunderstandings or even harm. This doesn't mean that data loses its relevance—far from it. Data helps us identify patterns, informs our decisions, and allows us to measure outcomes. But data without context—without the backdrop of lived experience—risks becoming an inaccurate or even harmful interpretation of reality.
Remember I am not an Evaluator or Researcher, and those folks would have a ton of insight to lend here.
I do, however, deal in the data, and that data can help us understand who NEEDS to be at the table, and who is underrepresented in any program or population of interest. But I’ve written before about how the data is one-sided because the healthcare system is broken.
So your goal is to marry the qualitative with the quantitative.
Because when you merge the data with the great work that Evaluators, Researchers, or Progam Managers do to create initiatives like this, you can get a much fuller, more equitable, and (likely) more effective program.
We should strive to be as comfortable and inclusive of using personal narratives and community wisdom as we are with Z-codes and claim datasets. Only through this blend of expertise can we hope to create programs that genuinely address health disparities and promote equity.
. . .
Actionable Idea of the Week:
Here's a challenge: in your next meeting about health equity initiatives, pause, look around, and ask, "Whose voices are missing here?" If you don't see representatives from the population you're designing for, it's time for a change.
Begin integrating their perspectives into your design process. You can start by initiating small focus group discussions or town hall meetings with community members. Use these dialogues to understand their needs, their experiences, and their suggestions.
And as you sift through data—be it from analyses, coding claims, or SDOH—remember to contextualize it with these narratives. This integration will enrich your understanding, giving depth to numbers and life to the codes.
Take these insights back to your teams. Initiate conversations about how to weave in these voices more systematically. It might be as simple as regularly scheduled consultation sessions or as ambitious as permanent seats at the decision-making table.
Finally, consider how this practice informs your understanding of health equity. Reflect on how centering these voices can better serve your mission to create more equitable health outcomes.
This isn't a quick fix, but an essential paradigm shift. It requires intentional, consistent effort to ensure we're not just designing for communities, but with them. Because that's where true health equity starts.
How will you bring these voices to the table? What changes do you see necessary in your current work?
Let's learn from each other and continue this discussion. Hit reply and let me know.
See you next week!
-Stefany
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