Public Release: 

Research to focus on chronic pain care, informed consent for patient records

Indiana University

INDIANAPOLIS -- An Indiana University-Purdue University Indianapolis researcher has been awarded $1.1 million to develop information-based tools to help primary care providers improve care for patients with chronic pain, a condition that affects 100 million Americans at a cost of $630 billion annually in health care costs and lost worker productivity.

The same researcher, Christopher Harle, has also been awarded a second grant -- $1.9 million from the National Institutes of Health -- in collaboration with University of Florida researchers to develop software that will help patients better understand what they are granting access to when they approve use of their electronic health records for research purposes.

Harle is an associate professor in the Department of Health Policy and Management in the Richard M. Fairbanks School of Public Health at IUPUI.

Improving pain care

For the first study, funded by the U.S. Department of Health and Human Services' Agency for Healthcare Research and Quality, Harle said his team would begin with these facts:

Primary care physicians have relatively poor experiences in providing care for chronic pain. Patients often report low satisfaction with the chronic pain care they receive in primary care settings.

"A lot of this stems from challenges around chronic pain, which has biological, physical and psychological underpinnings and therefore can be challenging to diagnose and treat effectively," Harle said.

Added to those challenges are apprehensions about long-used opioid therapies due to concerns about misuse and addiction, Harle said: "Physicians are shying away from prescribing these medications, which can create challenging interactions with the patient."

"We want to understand at a pretty basic level how clinical work happens for chronic pain in primary care, how a doctor and other health care providers obtain information about patients when it comes to chronic pain, how they use that information at a detailed level, and how they make decisions regarding treatment," Harle said. "We want to understand those decision-making processes and the information needs of health care providers as well as the information they may not have."

"Our goal is to use that information to design new prototypes for information technology-based clinical decision support," Harle said.

An example of that may be finding that clinicians critically need better tools to collect and track patient reported outcomes for pain symptoms or day-to-day functionality and feelings of depression and anxiety that often come with pain.

"Maybe we need better systems to collect that data and process it and communicate it to physicians in a way that they can take that information and modify treatment," he said.

Another useful tool may turn out to be better systems for capturing all of the data related to prescriptions for controlled substances, ensuring primary care physicians have at their fingertips a good way to assess patients' risk of abusing the medications, Harle said.

Primary care physicians or other providers who might be interested in participating or otherwise collaborating on this research are encouraged to contact Dr. Harle.

Clarifying patient consent

In the second study, researchers have proposed developing an interactive software tool they envision being used in doctors' offices in academic medical centers or other places where research takes place, Harle said.

The interactive software tool would essentially take a patient through an informed-consent process, giving the patient a better understanding of how their electronic health record information could be used in research so that patients can better provide an informed consent. Electronic health records are increasingly being adopted, used and interconnected between different health care systems, Harle said, and because of that, the idea of what is in an individual patient's medical record is changing.

"It's potentially much larger and more comprehensive than that file folder you might imagine sitting in your family doctor's filing cabinet," he noted.

An interactive software tool would allow people to be more informed and actively consent to the use of their health information without overburdening the health care system by requiring significant human involvement.


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