Data-based public health research hinges on patient support

A lot of promise is being placed in the use of patient data collected at routine physician visits. But for that promise to be fulfilled, doctors must persuade their patients it’s a good idea to share their information.

The Institute of Medicine’s Clinical Effectiveness Research Innovation Collaborative published a discussion paper April 15 that lays out the case for the collection and analysis of patient data. They say the availability of data presents many opportunities for learning, but gaining that access will require public support for the idea and assurances that sharing data is safe.

The authors of the paper presented several case studies of how data collected during routine visits — height, weight, problem lists, health history, medication lists — are being used in beneficial ways. Co-author Michael Murray, PharmD, MPH, executive director of the Center for Healthcare Improvement and Research at the Regenstrief Institute in Indianapolis, said he hopes that by sharing success stories, physicians will have good talking points for patients so that they can see how important data sharing is to improving health care.

According to the paper, physicians, especially those in primary care, play another role, and that is making sure the routine data they are collecting are being used for the greater good, which likely will mean participating in a health information exchange and partnering with academic institutions.

“Unless [physicians] have extra manpower to put toward the storage and collection of data and the analysis piece, it becomes a little bit tricky. By collaborating, it makes it a bit easier,” said Murray, who also is a distinguished professor of pharmacy at the Purdue University College of Pharmacy in Indiana.

Quelling fear of data breaches

Because much of that collaboration will rely on some level of patient consent, there’s a great need for the public to understand the benefits of the data collection and the repurposing of it, Murray said. But large-scale data breach cases that regularly appear in the media make it more difficult to sell patients on consenting to data sharing.

According to a February report from Redspin, an information technology security company in Carpinteria, Calif., 538 large breaches of protected health information were reported to the Dept. of Health and Human Services between August 2009 and Jan. 12, 2013. The breaches affected more than 21.4 million patient records.

“This whole notion of using patient data for research stirs up a bunch of emotions,” Murray said. And how the consent question is received could depend on how it’s framed. Physicians should have strategies for discussing these issues with patients, experts say.

The big piece that helps reassure patients is the process of de-identifying the data, said Rishi Agrawal, MD, MPH, a pediatric hospitalist at La Rabida Children’s Hospital in Chicago. They want to be reassured that their information will not be exposed.

Angela Dihn Rose, director of the American Health Information Management Assn.’s HIM Practice Excellence group, suggested that physicians show patients what de-identified data look like so that they better understand what the information means. Doctors also should explain to patients exactly how the data will be used and by whom.

Although the education should occur at the physician practice level, it doesn’t necessarily have to be done by the physician, Rose said. “As long as you educate the patient, anyone in the office can do it.”

She said patients are a captive audience while in the waiting room. Pamphlets or posters could be displayed that patients can review there.

Murray said that when the benefits of data analysis are explained to patients, they generally are receptive, especially those with chronic conditions.

Dr. Agrawal said that although he hopes patients will not be scared to participate in research efforts, he said how a physician talks to a patient about consent to share data should not be a one-size-fits-all solution.

The argument in favor of doing this is kind of abstract, he said. “By having good data, researchers and others are going to be able to improve the health care system to all of our benefits. But people tend to focus in on, understandably, their own immediate issues and don’t necessarily look at the broader picture.

“That’s why there’s a variation in individual responses,” Dr. Agrawal said. “Someone who is complex or chronically ill sees more tangible benefit to this than somebody who is relatively healthy.”