When new treatments and drugs come out, pharmaceutical companies will pay hospitals to participate in clinical trials. But getting those payments can be hard. Rural hospitals, some already on a financial precipice, may find participation too cumbersome.
Still, those in the field say medical research in rural areas is crucially important.
Dr. Darla Liles, chief of the Division of Hematology/Oncology at East Carolina University’s Brody School of Medicine, said recent rural research has found that there are differences between urban areas and rural areas.
Research in 2009 found that while Detroit had the highest mortality rate for breast cancer, Macon County in North Carolina was in the top 7 of the counties with high mortality rates.
“Without including rural populations in that research, we never would have known that,” Liles said.
In fact, according to the Komen blog, a blog about breast cancer from the Susan G. Komen Foundation, “Women residing in rural areas of the U.S. are screened for breast cancer less often than women in urban areas. Screening disparities between rural and nonrural women are even more pronounced among minorities; rural ethnic groups such as African Americans and Native Americans receive less breast cancer screening than their nonrural counterparts. Many rural regions have longer distances between medical facilities and less availability of health services, limiting access to breast cancer screening.”
Eyal Kedar, a rural rheumatologist who developed an interstitial lung disease clinic in the North Country of New York said that to achieve parity with urban medicine, things must change.
“The first is that rural America must have a louder and clearer voice. The second is that this voice must come from within rural America itself. The third is that this voice must now be heard,” he wrote in a column for the Daily Yonder.
Dr. Liles said that one of her colleagues is currently conducting research on how colorectal and pancreatic cancer patients are impacted by the distance they have to travel to get to treatment.
One of the challenges to rural medical research, she said, was getting participants.
“In urban areas, where you have big hospitals, they may open up a clinical trial and get 10-15 patients. We may get one or two,” she said. “And in rural areas there may be some hesitancy in participating in a clinical trial.”
That is a two-fold problem, first in that there aren’t enough patients from which to draw conclusions, and second in that clinical trials are paid on a per participant basis.
“Clinical research is not a profitable thing to do. It is an endeavor where there’s an intellectual curiosity that drives the engagement of clinicians,” said Jim Murphy, the CEO of Greenphire, a technical solutions company.
“They’re interested in the pursuit of being part of these trials, which are critical to bringing new drugs to market and making sure they are safe. But, if you are in a rural context, you have by definition for most indications or therapeutic areas, you have a low concentration of potential participants. And if you don’t enroll many participants, it makes it not only a non-profit endeavor, it makes it a very expensive endeavor.”
Clinical research, Murphy said, requires hospitals to provide the exact same care to patients in the trial as they do to normal patients, but it also requires there to be an added layer of data collection, extra visits, trained staff and other costs.
Much of that is upfront, out-of-pocket costs for the hospital. From paying patients for travel and participation to paying for staff and administering the treatment, some costs are absorbed by hospitals before they ever see a penny, Murphy said.
“It’s one thing to have a desire to be part of the research process, and then it’s another to be able to support the effort that is required to actually recruit patients and care for patients” he said. “The typical scenario is that for most rural hospitals or hospitals in general that… It can take months to get payment.”
But there is a benefit to being in a rural setting when it comes to doing research, Liles said. Trust.
“Overall, with a clinical trial, if the doctor introduces it and says this is a good idea, patients tend to be more willing to do it,” she said. “I think that we’ve been very fortunate in having patients willing to participate in research.”
Trust is also top of mind for Kedar. “When there is insufficient investment in a group or a person, there will be insufficient trust,” he wrote in an article. “When there is insufficient trust in an important part of a larger system, that larger system will likely fail. ”