Health IT, Hospitals, Policy

Should patients be able to withhold sensitive information from their EHRs?

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MedCity News has partnered with BioCrossroads to provide coverage focused on Indiana’s next generation of growth and innovation in life sciences.

With the consumer-driven movement in healthcare gaining further momentum, the notion of giving patients more control over which providers can view their EHR, and the choice to withhold certain sensitive information, has wide appeal.

Nearly half, or 49 percent, of patients who participated in the first-ever trial on the idea opted to withhold certain information, mostly related to past drug use, mental health disorders or STDs, according to the Regenstreif Institute, which conducted the trial with Indiana University School of Medicine and Ezkanazi Health.

During the six-month trial, 105 patients in an Eskenazi Health primary care clinic were able to indicate preferences for which clinicians could access sensitive information, in their EHRs. Regenstrief informatics developers then created a system where those preferences guided what information doctors, nurses and other clinic staff could see. Patients were able to hide some or all of their data from some or all providers.

But providers were able to override patient’s preferences to view any data if they felt it was pertinent to their healthcare.And therein lays a divide between physicians and patients, although more clinicians were OK with the concept than one might think, said Dr. William Tierney, Regenstreif president and CEO.

“Almost half of the providers were OK with it,” he said. “More than half were strongly against it. More people would allow it than I anticipated. They said ‘If the patient knows the risk, who am I to stop them?'”

Results of the trial, published in the Journal of General Internal Medicine, found that 54 percent of providers said patients should be able to control who can see information in their EMRs. Another 58 percent thought restricting providers’ access could be harmful to the patient-physician relationship. And 71 percent said viewing restrictions for EMR data would have a negative impact on the quality of care.

“When I’m taking care of the patient, I don’t want to have the patient data hidden from me,” Dr. Tierney said. “Even if the patient said ‘I’m willing to take that risk,’ I’m not willing to take that risk. What if something goes wrong? Are patients wiling to give up their right to sue the doctor? And is that a good thing or a bad thing?”

But the idea shouldn’t be entirely dismissed, he said, offering a middle ground for proponents of the concept. Certain, more benign data like ECG information or levels of sodium concentrate don’t need to be seen by everyone on the care team. Likewise, a podiatrist doesn’t need to know if a patient is on medication for schizophrenia, Dr. Tierney said.

But with issues related to past drug use or mental health, disarming the physician of important information – such as if the the patient has a history of drug abuse and seeks a perception for Oxycontin, for example – could lead to worse outcomes, he said.

“Fair Information Practice Principles — federal guidelines focusing on privacy issues — dictate that patients should control all access to information in their medical records; but hiding information from doctors could have dangerous repercussions,” Dr. Tierney said. “Yet without having control over who sees sensitive information in their electronic charts, patients may not be willing to tell such things to their doctors and nurses. So there is a tension between patients who should have control over their health information and doctors who may not serve them well, and may actually harm them, if important information is hidden.”

In addition, while the idea of giving patients greater control over their own information has merit, there’s the practical side of implementing the idea would be difficult, Dr. Tierney said.

“This took us three years,” he said of the trial.

The trial was supported in part by a $1.6 million grant from the ONC for Health Information Technology to the Indiana Health Information Technology Corp.

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