Could a new primary care research network accelerate health equity?

“Health equity” has been one of the top buzzwords of recent years as regulators, health plans, health systems, digital health companies – and especially patients – rally around the not-so-new notion that everyone deserves a chance at achieving their best possible health. 

Over the past two decades, philanthropic and government organizations have invested more than $179 billion in direct health equity efforts, according to a recent report from Ernst & Young, not including the untold billions spent on health IT tools to identify disparities, stratify patients by risk, and provide clinical decision support. 

Despite these efforts, however, the report notes that the return on investment has been marginal at best. It’s not news that people from underserved socioeconomic groups, including the elderly and the LGBTQIA+ community, still experience higher burdens of chronic diseases and worse overall health outcomes due to a variety of socioeconomic factors, including food and housing insecurity, low health literacy, social isolation, and bias from healthcare providers. 

While the healthcare system cannot erase centuries of inequality all on its own, there are certainly untapped opportunities to play a bigger role in advancing health equity – starting with the last item on the list. 

In addition to rethinking the way healthcare providers interact with patients at the point of care, leaders can start to take a new look at the scientific research and clinical evidence that underpins so many of their treatment decisions for people from under-represented social segments…which seems to be pretty much everyone who isn’t a white, middle-aged male with a middle class income. 

The existing corpus of medical research is hopelessly biased toward a normative population that does not accurately represent the demographic mosaic of the real patient landscape, with enormous gaps in gender, racial, ethnic, age, and body type diversity. 

Selection bias has been deeply entrenched in the research environment since the beginning of the modern era, driven in part by the innate (and hopefully unintentional) predispositions of primarily white, male authors, as well as the difficulty of enrolling and retaining diverse and representative populations in lengthy, complex studies centralized at academic medical center locations. 

Now, the National Institutes of Health (NIH) is planning to take a promising step in a different direction by moving research out of the exclusive realm of academia and into the heart of the healthcare system: the primary care environment. 

Over the next two years, the NIH will invest $30 million to pilot a national primary care research network that proposes to make clinical trial participation more accessible to diverse patients.

The Communities Advancing Research Equity for Health (CARE for Health) initiative will allow participating clinical sites to choose research topics that most affect their own communities and provide a simplified pathway for patients to contribute their data to research projects that closely match their own health priorities. Participants will receive final study findings and aggregate results for their efforts, which may help to inform personalized treatment decisions. 

The network will focus on studies around disease prevention, efficiency in healthcare delivery, and health education, as well as including trials with multi-disease endpoints.  Primary care providers, including those from Federally Qualified Health Centers (FQHCs), will receive funding and other support to help them integrate clinical research intro their workflows, including tools to embed data collection in their EHR processes. 

“The goal is to create a learning health system in which research informs clinical practice and clinical data informs research,” said NIH Deputy Director for Program Coordination, Planning, and Strategic Initiatives Tara A. Schwetz, PhD. “As the program grows, sites and their communities will help design new clinical studies reflecting their specific health needs, and results from those studies will inform the care they receive.” 

The system will include a clinical science center to provide support for study design and execution, as well as an operations center to manage legal and compliance tasks.  Independent review boards will monitor ethics and safety, while a community engagement arm will support patients before, during, and after their participation. 

The project plans to leverage existing community research networks and for-profit industry partnerships to extend its reach and capitalize on the learnings generated throughout the research process.  

“We must adapt our research to be more inclusive and more responsive to the needs of communities currently underserved in health research,” said NIH Director Monica M. Bertagnolli, MD. “Community-oriented primary care not only provides essential health services, but it also engenders trust among those who lack confidence in recommended medical care or science. We earn people’s trust when they get access to the care they need and when they can see direct benefits from their participation in research.” 

While CARE for Health is starting small with its two-year pilot, it has the opportunity to become a roadmap for how to better integrate underserved communities into the clinical research ecosystem.  

Bringing clinical trial opportunities directly to patients in the places where they seek care, and giving them the chance to actively participate in study design and selection, could be a promising way to start expanding the realm of medical knowledge to accurately represent real-world populations. Ideally, the result will be a better understanding of the needs of diverse communities, which will in turn foster more equitable decision-making on issues that affect everyone.  

Healthcare providers interested in learning more about participation can visit the NIH research opportunity announcement site here. 

Jennifer Bresnick is a journalist and freelance content creator with a decade of experience in the health IT industry.  Her work has focused on leveraging innovative technology tools to create value, improve health equity, and achieve the promises of the learning health system.  She can be reached at jennifer@inklesscreative.com.