New research starting at the Indiana University School of Public Health seeks to develop information technology tools to support the care of patients with chronic pain, as well as educate patients on the benefits of permitting their electronic health records data to be used for research purposes.
Researcher Christopher Harle has received a $1.1 million grant from the Agency for Healthcare Research and Quality to develop technology tools, and a $1.9 million grant from the National Institutes of Health to build software that helps patients through the process of sharing their data for research.
“It is fair to say the typical EHR doesn’t provide decision support content that fully recognizes the complexity of chronic pain and that patients often also have multiple other conditions,” Harle says.
The project seeks to develop clinical decision support software that, during various steps in the care process, can help physicians understand the type and severity of pain, as well as gather data on opioid therapies being used to determine if they are helpful and if the benefits outweigh the risks of side effects or addiction.
Too often, Harle notes, patients with chronic are not getting better and may even be getting worse, yet high-risk treatments continue. The decision support software will remind physicians to engage patients in conversations about the pros and cons of current treatment and whether changes should be made. The software will walk clinicians through processes to decide whether to reduce or stop current medications and assess alternatives.
In this early phase of the project, market research is being done to understand physician and patient needs and better inform development of tools.
“We want to understand at a pretty basic level how clinical work happens for chronic pain in primary care, how a doctor and other healthcare 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 says.
“We want to understand those decision-making processes and the information needs of healthcare providers, as well as the information they may not have,” Harle continues. “Our goal is to use that information to design new prototypes for information technology-based clinical decision support.”
For example, researchers may find that clinicians need better tools to track and manage patients’ pain symptoms, day-to-day functionality and feelings of depression or anxiety.
The researchers presently do not have EHR vendor partners, but would certainly be interested in talking with them about products they have or are developing, and inform vendors of the university’s work and seek partners, he adds.
The patient consent tool to share data with researchers also being developed likely will be delivered to patients in the waiting room via tablet computers. Consent forms, Harle says, often are minimally understood; patients scan the document and sign their name.
The consent document on the tablet will be interactive; as patients go through it they will be able to click on links to get more information on various topics. “Ethically, they should fully understand,” Harle says. “I think we will find people to be generally willing to share their data, but they should at least have the option to say no.”
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