Deep in the heart of Texas – and beyond
This was brought into stark relief for me in Texas when we established a database of more than 120 million state public health records, which revealed that at least half of the population in Texas lived 100 miles or more from a basic health facility. Effectively, that meant that half of the people in the Lone Star State do not have adequate access to healthcare, nor do they have opportunities to participate in clinical trials.
One of our studies was a follow-up that tracked amputees, who require constant care. Most of the patients in our study lived in areas where orthotic specialists were sparse, simply because they lived too far away from urban areas and were unable to receive the care they needed.
What’s true in Texas is also true across the country – consider the numerous requests for proposals from the National Institutes of Health seeking ideas for contributing to or improving access to care in rural areas.
Trials and tribulations
The implications of the rural care gap go beyond its impact on patients in outlying areas, extending to clinical trial design. If a study’s entire patient cohort lives within 10 miles of a major urban center, it’s already created selection bias for people from a certain area with a level of income that gives them convenient access to care. That means we’re missing huge swaths of the population, both in terms of our ability to study and develop new treatments, and in terms of their access to needed care.
Technological solutions are at hand that could help bridge this gap, offering both short- and long-term benefits to patients and the healthcare system overall.
Bridging the gap
An inexpensive connectivity module, installed on a hospital’s mainframe, could pull in a treasure trove of registry data on patients who aren’t in the insurance claims records, enabling researchers to identify cohorts of patients with rare conditions who are effectively invisible to the healthcare system, and design studies around those unexamined populations. Those studies in turn lead to new and better treatments over the long term, helping a new generation of patients with those conditions – and improving care for everyone.
Another solution involves decentralized clinical trials, which don’t require patients to travel to a research site in order to participate. A registry data “gateway” would help identify those patients, who could then enroll in a decentralized clinical trial involving their treatment and a companion device, diagnostic, or app; for patients who have intermittent cellular or Internet connectivity, their device would store the data, using a solution like REDCap Cloud’s mobile EDC, until it linked to a network, and then upload the data into the study repository.
Building this particular bridge requires a few things. First, cooperation among the vendors who host and maintain the data repositories, the institutions and consortia that design and conduct large-scale trials, and rural healthcare providers is paramount.
Second, the technological ability to safely and securely collect, aggregate, and anonymize the data. This starts as early as study design and includes data collection, architecture for registry data repositories, and the capability to integrate a wide variety of systems.
The final piece is the ability to cull those rural patient records to identify potential trial cohorts, get in contact with those patients, and facilitate their participation in the study.
We already have the technology to start bridging the rural treatment gap. It’s time to start putting it together for the benefit not only of underserved populations, but for the betterment of everyone.
Ryan Warth is Senior Director of Operations at REDCap Cloud.
