The Strong Heart Study
Three field centers. Three Tribal Nations. Nearly four decades of science that serves the people it studies.
In 1985, the Secretary's Task Force on Black and Minority Health — known as the Heckler Report — identified a critical gap: there was almost no cardiovascular data on American Indian populations. The health system was making decisions about Native communities using evidence built on other populations.
The Strong Heart Study was the direct response. Launched in 1988, it set out to understand why heart disease, diabetes, and their risk factors affect American Indian communities differently — and to build the evidence base that was missing from national health planning.
Nearly forty years later, SHS has produced one of the most comprehensive longitudinal datasets on cardiovascular health in any population — and every bit of it was collected in partnership with the Tribal Nations it serves.
2 — The Impact
Research doesn't treat patients. It changes the systems that do. Before the Strong Heart Study, American Indian communities were invisible in the cardiovascular science that was supposed to protect them. Here's what changed.
Local research helps us make standards specific to our population to diagnose, treat, and prevent health conditions. It allows us to modify and improve interventions that are designed by and for our people. And the data can be used by the Tribe and community programs to help secure grant funding.
This is what happens when research stays in the community long enough to matter.
3 — Data Sovereignty
We know the history. Tribes have experienced adverse consequences from investigators being insensitive to sacred traditions. Research data collected from Indigenous communities has been used without consent, shared without permission, and stored in repositories where the people it came from had no say in how it was used.
The Strong Heart Study operates on a different principle: the Tribal Nations that participate in this research are the rightful stewards of their data and knowledge. This isn't a policy we adopted. It's how this study has operated from the beginning.
What this looked like in practice
In 2009, the NIH told us that open data sharing was now required for all federally funded projects. The SHS investigators had been meeting with NIH about this policy — and refused to budge. The data, they believed, belonged to the Tribal partners. Not to NIH. Not to a public repository.
NIH finally said: if you can get a letter from one Tribal nation stating they oppose open data sharing, we'll honor it for all SHS data.
The Cheyenne River Sioux Tribe passed Resolution No. 1-2009-CR — unanimously. Fifteen yes, zero no. It declared that all DNA information collected on the Cheyenne River Sioux Reservation belongs to the Cheyenne River Sioux Tribe, and may not be released without specific Tribal authorization.
The resolution also stated what the Tribe already knew: that the trust between the SHS and the Tribes had been built carefully over time, and could not automatically be transferred to investigators who had no such relationship with the community.
NIH honored that resolution for all SHS Tribes. That's what decades of trust look like when it counts.
4 — Knowledge to Community
497 publications in peer-reviewed journals is important. But a paper in the European Journal of Epidemiology doesn't help a community health worker in Eagle Butte explain to a patient why their risk factors matter. Research locked behind jargon and paywalls doesn't serve the community that made it possible.
That's why we're building tools to make Strong Heart Study research accessible and usable — for community members, tribal leaders, clinicians, and the next generation.
It took 40 years from the first evidence on smoking before rates meaningfully dropped. Change is slow. But without the evidence, there is nothing to change. And without returning that evidence to the community, the change never reaches the people who need it most.
The knowledge belongs to the community. We're making sure it gets there.