What patients think, or even know, what they’re entitled to know about their own medical record and what physicians and health systems think a patient should have access to continues to vex both sides of the equation, but the scale is tilting more toward a patient-focused mentality, even among regulators.
Joy Pritts, the former chief privacy officer for HHS, detailed the lengthy process and evolving regulations and attitudes around access to medical records by patients, arguing that “knowledge is power” at ENGAGE in Bethesda.
Not just with the patient medical record, but also with price transparency information that better informs the patient, she said.
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“There are efforts here to really improve this area,” Pitts said, referring to both private sector movement toward transparency and CMS’s recent efforts to unleash reams of data.
“Healthcare is complicated. This isn’t easy. There’s a lot more work to be done in this area, but we are getting there and have taken steps in the right direction.”
Yet many providers still remain skeptical, fearing that giving too much information to the patient will either increase their workload because of endless questions or that the patient won’t be able to understand the complexities of their own health. Or, worse, the pervasive fear of litigation, particularly as it relates to HIPAA.
“So what has been the provider reaction to access? Some have really embraced it. There is unfortunately a substantial proportion who are not on board with it,” she said, noting that HIPAA actually requires a degree of patient access to their records, though not outright oversight.
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“We’ve found that failure to give patients access to records as required under HIPAA is one of the top failures of providers,” she said. “They don’t do it. HIPAA is being used to deny access when legally the patient is able to get it.
“It’s moving in the right direction, but not fast enough,” she added.
The interpretation, and fear, of regulations and what the letter of the law actually means was a central theme of ENGAGE, with hospitals citing similar fears with EHRs and burdensome documentation that detracts from actual patient care, as highlighted in “Code Black,” a documentary that kicked off ENGAGE.
Despite that seeming disconnect, there are positive movements: starting Oct. 6, patients nationwide will be able to gain full access to lab results, which previously fell to disparate state-by-state law, according to Pitts.
With the movement toward patient empowerment and the consumerization of healthcare, are physicians’ concerns justified? Pitts said a balance needs to be struck, but that perhaps the provider has less to fear than they might think.
She cited a pilot program by the Robert Wood Johnson Foundation called Open Notes, during which 105 physicians from Beth Israel Deaconess Medical Center, Geisinger Health System and Harborview Medical Center shared their notes with 19,000 patients.
The results were convincing, she and others said, noting that 82 percent of the patients opened the notes at least once. Another 77 percent “thought this gave them more control and it helped them adhere to medication,” she said.
“What was more surprising was the reaction of the provider,” she continued. “There was no increase in email, very few had longer questions or longer visits, and they found it actually helped them figure out what’s accurate and what isn’t. Most tellingly, perhaps, is that no one opted out when the pilot was finished. It shows that when you take these steps and bring people along, it isn’t as scary. You can really be a success.”
Yet challenges do remain to the approach of access – as it stands, patients physically have to request their medical records, often in paper format. Health information exchanges can be a key bridge in this gap, but the HIPAA regulations on data sharing and medical record ownership are vague and still in flux.
“We need to make it simpler for patients to get their own health information,” Pitts said. “Health information exchange networks can get the record in one place, but the patient can’t. The patient doesn’t have the same ability and that is something we need to invest in.”
With the proliferation of technologies being applied directly to this space, perhaps it’s just a matter of time before the patient can carry their own medical record electronically and securely.
