It was one of a series of pilots hosted by Office of the National Coordinator for Health Information Technology in an initiative called Data Segmentation for Privacy, or DS4P.
“They understood that they could share all of their information,” said Dr. Ernest Carter, the department's deputy health officer and point man on the DS4P project. But they also were offered the chance to select parts of their record they wanted to share and other parts they wanted to mask.
“Whether it was alcohol or cocaine use, they had a list of things they could choose from,” Carter said. “Nobody was standing up cheering, but the response was very favorable.”
“Of the five, all of them blocked something,” he said.
The medical records of these and many other behavioral health patients are covered by 42 CFR Part 2, a more stringent federal privacy rule than HIPAA, that requires providers obtain a patient's consent before their information can be disclosed or exchanged, even for treatment and payment.
Picking and choosing before disclosing is typical behavior for all patients afforded a choice, according to researchers from Clemson and Indiana universities working with the Regenstrief Institute in Indianapolis on another DS4P project.
In a study of the granularity of individual preferences among 30 Indiana patients, not one agreed to share all of their information with all providers on a list of provider types. Primary-care physicians were trusted most and fared best, but still only about 75% of patients surveyed agreed to share all their records, even with them.
Emergency physicians, who often make powerful arguments that they need the authority to access all of a patients' record despite a patient's wishes to the contrary, were far less favored by participants in the Hoosier survey, with only 33% to 44% of patients saying they would be willing to share all of the information with them. Those patients surveyed who reported having highly sensitive medical conditions were less willing to share their information with ED docs than were those without sensitive conditions. The study was published in the Journal of the American Medical Informatics Association.
“I've practiced medicine for 30 years, so I understand from a physician's standpoint why you want to break the glass, but to get to true patient-centered care—(where) care will improve because patients will start taking responsibility—they have to have that power” to say who gets to see their records and who doesn't, Carter said.
“It's a paradigm shift from a physician-centric way of doing business to a patient-centric way of doing business, and the old docs have to change,” he said. “And I'm an old doc.”
The department plans to launch its consent management system in full-production mode across all four of its care sites next week. Then, the idea is to extend links to the country's health information exchange to providers outside of the county health department, provide access to the records of county patients to affiliated primary-care clinics in a county-supported “medial enterprise zone,” to a couple of federally qualified health centers and to the county hospital.
“Being able to exchange locally, what it does for the health department, it really allows us to start monitoring patient-population outcomes in relatively real time,” Carter said. “We can do better intervention decisions and overall population health is improved that way.”
“I also think it will be helpful in getting the consumers utilizing their health information,” Carter said. “The first people we introduced this to, it made them more acutely aware of their own conditions. It becomes a tool for health literacy. Once somebody starts understanding who they're sharing their information with, we can get them empowered. That's big.”
Carter said the process of registering patients and helping them develop their consent directives has been incorporated in the workflow of their behavioral health providers.
“It still has to be a human being to help you get you into that,” Carter said. “When a counselor helps them with signing a consent and explaining what it means, Consent2Share comes in at that point and in that context.
“It doesn't cause a workflow disruption, if you do your homework up front and integrate it into your workflow,” he said. “It doesn't' take an inordinately greater amount of time to get someone to sign a consent. It's like any other technology adoption, there is a wearing in curve, but it's not so steep that it should stop the technology from moving forward.
“I feel pretty strongly this will catch on,” Carter said. “Our staff was extremely excited about doing it. They were the ones who had a sense whether their patients will sign up for this or not. That's why I felt secure in taking a dive into it. And I think this is a way for people to feel empowered and I'm an advocate of that.”
Follow Joseph Conn on Twitter: @MHJConn
