Patients want more access to their health data, survey finds

For all the talk about patient-centeredness in healthcare, there's a dissonance between patients' desires to access and control their healthcare information and the lack of connectivity and control that today's healthcare system is affording them, according to data from a recent survey of U.S. adults by the healthcare arm of the consulting firm Accenture.

Better than two thirds (69%) of survey participants indicate they believe they have a right to access all of their healthcare data.

The survey measured attitudes of the well (918 respondents) and the chronically ill (1,093). Significant majorities of both groups—86% of well individuals and 87% of those with chronic conditions—indicated it was either “important” or “very important” that they have control over their healthcare information.

Accenture defined control as meaning that patients “have access to medical records and could use these records to make decisions about your personal care if you wanted to.”

Right now, though, those surveyed don't feel all that empowered. Just 16% of healthy respondents and 17% of those who are chronically ill indicated that they have complete control over their healthcare information. Another 38% and 39%, respectively, felt they had some control.

Asked how concerned they were about their personal privacy, the chronically ill respondents were slightly more worried than the healthy, with 65% of the chronically ill patients indicating elevated levels of concern (“very” or “somewhat” concerned) compared with 61% for healthy respondents. Even higher levels of concern were expressed by patients with certain chronic illnesses, ranging from 68% to 72% for patients with heart disease, COPD, obesity, arthritis, asthma and osteoporosis.

Both groups of patients said they have relatively low levels of access to their patient information even if their healthcare providers have electronic health-record systems, with 70% of the chronically ill and 76% of healthy patients indicating they have never accessed their electronic records from their caregivers with EHRs.

The primary reason they gave for not tapping their own records was not knowing how to do it.

There is a lot of consternation these days by providers over the increased requirements for meaningful use in Stage 2 of the federal EHR incentive payment program, particularly those dealing with physician-patient messaging and record access. One of the new rules requires meaningful users to enable patients to view, download and transmit their health information within four business days.

Market forces driven by consumer demand will also force provider-patient interoperability, according to Dr. Kaveh Safavi, the head of Accenture's global health business.

“There is a big divide between a patient's perception of what their right ought to be and what's available,” Safavi said. But patient demand is “an unstoppable force,” he said, especially as patients are increasingly at financial risk through shifting co-pays, deductibles and out-of-pocket limits.

“You'll start to see market forces create pull on the front end and the government pushing on the back end,” Safavi said. “There are already practices that are trying to differentiate themselves by making all of these things available.”

Follow Joseph Conn on Twitter: @MHJConn