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Rather than just getting more cheerleading for a technology that has been disappointing for years, attendees at the AMIA annual conference heard a refreshingly frank assessment of the slow uptake of personal health records.
But they also heard about strategies informaticists can use to better employ PHRs to engage patients and clinicians alike. And they got to hear from activist patients and caregivers for an often-overlooked perspective.
Noting that the meaningful use regulations to date have not specified a preference for PHRs or patient portals when it comes to making records available to consumers or engaging patients, Joseph Kannry, MD, lead technical informaticist at Mount Sinai Health System in New York City, said no institution wants to put up multiple portals.
He also discussed a paradox: Sick patients are most in need of being engaged with a tool like a PHR, but, "the sicker they get, the less likely they are to use it."
Jessica Ancker, just promoted to associate professor of healthcare policy and research at Weill Cornell Medical College in New York, showed another raw fact: Even as physician adoption of EHRs has soared, PHRs and portals alike remain underutilized.
Research Ancker has conducted herself showed that just 17 percent of patients in New York State were active users of portals in 2013. Although that's up from 11 percent in 2012, it is far behind the national physician EHR use of 78 percent last year, according to CMS data. Nationally, Ancker said, the California HealthCare Foundation reported 7 percent portal adoption as recently as 2010.
Other published research that Ancker discussed showed a perceived lack of value in PHRs and portals alike. One study found no clear pattern of better outcomes in patients actively using PHRs, though another showed that such patients saw primary care physicians more often than nonusers. PHRs helped with medication reconciliation, one study concluded, though another found no improvement in control of hypertension.
"Results have been a little mixed and certainly not a real home run," Ancker said.
"There's some hope that they could improve patient motivation by strengthening the patient-provider relationship," she added -- however, "there hasn't been a coherent model for what this is going to do."
Ancker said personal health records – called "patient health records" by some of the panelists – actually are not very patient-centered or patient-friendly. "In fact, they tend to be doctor-centered," she said. Notes pushed to PHRs often are filled with medical jargon but not much explanation for the layperson.
There have been no studies showing any demand for "download" or "transmit" functions of PHRs, Ancker said. (Stage 2 meaningful use requires hospitals and physicians to get 5 percent of their patients to view, download or transmit data to and from their care providers via portals or PHRs.)
Kannry, meanwhile, asked some pointed questions, most of which were rhetorical: Why should well patients use PHRs? Are commercial PHRs able to translate messages for non-English speakers? How can vendors or healthcare organizations make the authentication process less "onerous" while still safeguarding privacy? Who controls the data for adolescents? How should healthcare organizations handle sensitive parts of medical records such as HIV tests, mental health notes and treatment for substance abuse that not every clinician needs to see?
He said design of PHRs has not evolved much since they first arrived in the 1990s, long before Google or Microsoft showed an interest in this area.
"What we have built with personal health records is based on early research about giving patient data. It's not about what patients want," Kannry said. "We haven't gone beyond the initial research in the designs."
Guest speakers from the Society for Participatory Medicine offered their own views as patients and caregivers.
"My questions are different from yours," said Gail Embt, a member of the patient experience council at the Sullivan Institute for Healthcare Innovation and caregiver for her parents as well as her special-needs son.
"I'm going to be engaged with my healthcare when I have an issue in front of me," Embt said. She also performs triage for her son. "I'm his mother and I'm his caregiver. I have to prioritize. I have to figure out what to deal with first."
MaryAnne Sterling, a member of the federal Health IT Policy Committee’s Consumer Workgroup and a longtime caregiver for her aging parents and in-laws, three of whom had dementia, asked about data stewardship when providers deal with family caregivers. Who should doctors and nurses listen to and share data with, she wondered?
"We really can't put the clinicians in the position of determining who is making the right judgment for the patient," said Paul DeMuro, an attorney affiliated with Oregon Health & Science University.
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