By Rebecca McKinsey
Policy steers clinical research priorities. Economic burden provides the fuel. And data turns the key to get the engine of research moving.
But when it comes to chronic pain, that key is still missing.
There is no centralized, coordinated effort to collect and analyze national data related to chronic pain. As a result, research aimed at improving pain care lacks the robust, population-level data it relies on. The Advancing Research for Chronic Pain Act, a proposed bill the U.S. Pain Foundation has been closely involved with since its inception, seeks to change all that.
The legislation would require the Centers for Disease Control and Prevention (CDC) to analyze and publish population health data on the incidence and prevalence of pain conditions; demographics and geography; service utilization and treatment effectiveness; indirect and direct costs; and risk factors, comorbidities, and health consequences.
“Without accurate, population-level data, you lack a solid understanding of the size and characteristics of the problem,” says Cindy Steinberg, U.S. Pain’s director of policy and advocacy. “You cannot formulate good policy solutions nor judge the effectiveness of policy interventions.”
Patchwork progress: The limitations of individual efforts
Hanna Grol-Prokopczyk, PhD, associate professor of sociology at University of Buffalo, has made a career of documenting chronic pain—working to fill in data gaps related to its prevalence, population variations, and consequences.
“This is a topic that is not getting the attention it deserves,” she says.
Her research often raises new questions, such as the discovery that the prevalence of arthritis in West Virginia is more than three times higher than in Minnesota. Short-term academic research efforts are inherently limited, Grol-Prokopczyk explains.
“We try our best, but individuals just don’t have the resources to get more extensive results,” she says. “To have a multi-decade commitment, you need data-collection efforts that are going to outlast an individual’s career.”
She is working with Anna Zajacova, PhD, a demographer and sociologist at Western University in Ontario, to ask 5,000 people in the United States detailed questions about their pain, with plans to analyze the results by location.
They anticipate compelling findings—but the outcomes are limited to a one-time, relatively small sample. Data collection and analysis on a national scale could reveal so much more.
Putting the pieces together: The promise of national-scale data
Most of Grol-Prokopczyk’s analysis of chronic pain relies on limited insights from two national data sets, the Health and Retirement Study and the National Health Interview Survey, neither of which is designed to focus on pain. The latter also guides the CDC reports on national chronic pain prevalence—which the Advancing Research for Chronic Pain Act would significantly expand.
“To accurately get a sense of the burden of a health problem, you need to know how many people have it, how it’s changing over time, who the high-risk demographic groups are, and where the high-risk areas are,” says Grol-Prokopczyk. “For any condition you want to take seriously, you need to have high-quality, population-level data.”
Knowing which types of pain are most costly and how many people are impacted helps clarify funding priorities.
“The way we treat pain, where people spend years going to doctor after doctor, having test after test that shows nothing, is inefficient and expensive,” Steinberg says. “Putting a dollar amount on that cost would help justify investing in developing new therapeutics that have real promise for reducing certain types of pain.”
Grol-Prokopczyk points to the National Program of Cancer Registries as a model. It regularly incorporates diagnosis, treatment, and mortality data from 97% of Americans, revealing trends across geography and demographics that drive research questions and collaborations.
“We want to spur that kind of national collaboration for pain, too,” she says. “National data would help individual researchers work together on ways to prevent pain from becoming chronic to begin with, on identifying best practices for pain management, and on understanding effects of social policies involving regulation of pain medications and access to care.”
Advocacy remains critical
Although the Advancing Research for Chronic Pain Act did not ultimately pass in the last legislative session, advocates are exploring opportunities to re-introduce the bill, which are now being led by U.S. Sen. Tim Kaine’s office.
In the meantime, a proposed Massachusetts bill that expands integrated pain care access and also calls for the collection and reporting of statewide chronic pain data could serve as a model for other state legislation. Steinberg notes that local momentum may drive renewed federal interest.
“Chronic pain research has long suffered from gaps in basic epidemiological data,” says Lindsey Yessick, PhD, who worked on the federal bill in its early stages as an American Association for the Advancement of Science fellow in the office of U.S. Sen. Bob Casey, the bill’s originating sponsor. “Yet much of that information is already collected—it just isn’t reported clearly and regularly. This bill helps ensure that public investments in data collection are fully leveraged so scientists can keep pushing the field ahead.”
Yessick, who spent nearly a decade studying chronic pain and working in health policy prior to joining Casey’s office, worked with U.S. Pain on finalizing the proposed bill and garnering bipartisan support.
Continued advocacy from people living with pain will be crucial in moving the bill forward, says Yessick, who recently wrapped up a position as a public health systems adviser at the Department of State’s Bureau of Global Health Security and Diplomacy.
“I was a pain scientist working on the Hill—no one was more sold on the importance of chronic pain research than me,” she notes. “But it took advocates to bring the issue to the forefront. It’s the personal stories that cut through the noise and create focus for the decision-makers and their staff.”