One of the building blocks of the meaningful-use program is the hope that patients can access their medical records more readily than before the digital age. But, as the healthcare system moves into the second stage of the EHR incentive program, the reality is three tiers of patient access: patients who are struggling to get access to their data; patients who have access to their records but aren't enthusiastic about using them; and patients who both have access and are enthusiastic about using it.
Advocates hope that allowing greater patient access will increase patient control over their healthcare, making it easier to switch doctors, or to participate in their own care by correcting errors or asking questions.
But the process of increasing access is difficult for providers to accomplish: often they argue that patients aren't terribly interested in accessing their records. And it's unclear whether the healthcare system has the right technology to support the switch.
Also, some providers are unsure what results, in terms of reduced cost or better care, they can expect from increasing patient access.
Patients do not actually own their medical records; doctors do. Patients merely have some legal rights—such as the right to access their records, at reasonable cost; and the right to request changes to errors in their record.
Advocates of greater access hope that allowing it could have beneficial effects. First, it could allow patients to correct errors.
Joy Pritts, the former chief privacy officer at the Office of the National Coordinator for Health Information Technology, noted in an October speech at a Bethesda, Md., conference that, “Almost every patient I've ever talked to will say, when they've received their medical record, that there are major items missing in their record—or things that don't belong in their record at all. There's nothing intentional about that; there's just a lot of documentation that goes into healthcare.”
Increased patient access also eases switching providers. John Phelan is the CEO of Hopewell, N.J.-based startup Zweena Health. His firm takes patients' medical records, converts them into digital form, and makes them portable. So, he said, if a patient moves or retires, they can take their data to a new provider to brief them.
Making data portable also helps patients switch providers if they're dissatisfied, introducing new competition, notes an October 2014 draft paper published by the National Bureau of Economic Research, a not-for-profit research organization.
“Care is highly customized,” writes Laurence Baker, professor of health services research at Stanford University. “Through repeated interaction, a physician gains information about the patient's clinical characteristics, preferences and health behaviors which enables her to provide more effective treatment.” Allowing access to patient data gives a new provider a shortcut into understanding the history of a patient, meaning that increasing access can increase competition, Baker and his co-authors note.
But patients' access to their data is, at the moment, limited. A survey, conducted during 2013 by the ONC, notes that only 28% of patients were offered access to their online medical record. That proportion should increase as the incentive program for EHRs marches on; the second stage of the program requires that 50% of patients for a given provider or hospital be offered access to their records, and that 5% of the patients actually use it.
But, until then, patients who are interested in looking at their own record often have to request a hard copy from their providers. That can involve a per-page expense, Phelan notes. The expense is supposed to be reasonable, and states often impose a cap on their fees. Indeed, Baker and his co-authors write, those caps are associated with increased physician-switching between 2001 and 2007: caps on fees increase patient switching by 2.5% for primary-care physicians and 1% for specialists, they find, though they do not find a statistically significant effect on prices.
But Phelan believes fees may be increasing. Over the past few months, many of his customers have reported an increase in the incidence of administrative fees, often on the level of a dollar per page. Those administrative fees are often driven by a fear of switching; often, he finds, if his customer assures the provider that the request isn't a prelude to a switch, the fee is waived.
Still, fears that access could lead to increased competition are a common reason for resisting or denying access to patient records, Pritts said. Denial of access is a common issue for patients. The Office for Civil Rights at HHS is the agency charged with investigating and enforcing rules relating to the Health Insurance Portability and Accountability Act, the law that deals with issues of patient data privacy and access. While an agency spokeswoman declined to give exact numbers, she noted that complaints about patient access have consistently been the third-most-frequent enforcement action taken by the office since 2003. That ranks behind “impermissible uses and disclosures” and “safeguards” on the most-common list.
When patients do have online access to their records, providers often have struggled with getting patients interested in using the records. And though advocates hope access can translate into higher-quality care, these providers say that tangible effects haven't been realized yet.
For example, the American Medical Association sent a letter to ONC Director Dr. Karen DeSalvo on Oct. 14 arguing that providers were having particular difficulty fulfilling the view, download and transmit requirements that require providers to ensure that at least 5% of their patients access their records.
Chuck Christian, the chief information officer of St. Francis Hospital in Columbus, Ga., said in an interview that the requirements “basically hold the provider accountable for patient behaviors after they leave your organization.”
“Making the provider responsible is basically like making your mechanic responsible for how fast you drive,” he said. Still, St. Francis will attest to the second-stage EHR incentive program requirements, and Christian himself doesn't disagree that making the data available is advisable.
Data presented at an ONC advisory committee meeting Nov. 4 underline what a challenge the requirements have been for hospitals; 49% of hospitals that had attested to the second stage requirements had between 5% and 10% of patients who had actually viewed, downloaded or transmitted their record, meaning they had barely cleared the requirement. Another 37% had 10% to 19% of patients access their records.
George Hickman, the CIO of Albany (N.Y.) Medical Center, said that low engagement is rampant, and that providers often have to devote nurses or other labor just to get patients signed up. Other providers interviewed agreed.
Christian believes that the technology will evolve, making an analogy to the banking industry and its adoption of the ATM. “One of the things banks did, they had to actively get people to sign up for it,” he said.
“Now it's—well, when was the last time you were in your bank?” he asked, “There's a maturation process in healthcare.”
Dr. Stephen Lawless, vice president of quality and patient safety at children's hospital system Nemours, said that he suspects patient access to their records will be most helpful for chronic patients and, in particular, for readmission rates. “But the jury's still out on it,” he said.
Lawless suspects there's a technology problem. The electronic health record is “set up to be a provider-provider communication tool,” he said, not a tool for patients. One patient, he recalled, served as an example.
The patient had left the hospital 10 times and received 10 discharge summaries, containing information from his record. But the 10 different summaries, from different departments and for different incidents, were 98% similar. The EHR makes it too easy to rely on templates, he believes.
As a result, patients often don't understand their care: Lawless cites statistics showing that 78% of patients discharged from the emergency department don't understand their diagnosis and treatment, and 37% of discharged patients don't understand how to use their medication. Lawless hopes that EHR access, optimized for patient use, will allow providers to communicate more effectively.
The uncertainty surrounding patient access leads to uncertainty about the benefits—what they are, and what situations they occur in, said Julia Adler-Milstein, a professor at the University of Michigan School of Information. She suspects that positive effects will likely be seen for chronic-care patients, and hopefully be demonstrable.
But it's hard to tell at the moment, as studies don't often capture enough contextual information to see why an intervention was successful at one place but not another, she said.
Some provider systems are reporting high satisfaction, however. Terhilda Garrido, Kaiser Permanente's vice president of health IT transformation and analytics, notes that the system started experimenting with patient access in 2002. Now, the system has 4.7 million patients, over half of those eligible, registered for its patient portal.
Garrido argued that the patient portal increases patient satisfaction, as patients who register for the portal are more likely to remain members. Indeed, Kaiser is continuing to open the records: in Hawaii, patients can now view radiologists' interpretations; and the system is making an effort to translate its records into Spanish.
In a speech at CHIME's fall forum in San Antonio, Geisinger Health System CEO Dr. Glenn Steele also echoed the praise for open access of patient data. The system expanded its open notes program in 2013 to 1,110 providers and 170,000 patients. The expansion was based on a 12-month trial, conducted with 8,700 patients, that showed a majority of patients feeling more in control over their care and more likely to take their medications.
A report presented to ONC in June 2014 by NORC, a research organization, found that open records could help reduce errors in their medication records. The organization contacted 1,500 Geisinger patients, with their medication record, between January and June 2012. Of that group, 369 requested changes in their record; 68% of requests led to a change in the record. A focus group conducted with pharmacists involved in the trial suggested that they were “impressed” by patients' efforts.
“We think it's the greatest thing since sliced bread,” Garrido said. “As do patients.”
Access advocates can only hope more and more patients, and providers, start feeling the same way, and soon.
Follow Darius Tahir on Twitter: @dariustahir