Health IT

Mostashari wants ‘day of action’ for widespread patient access to records

Former national health IT coordinator Dr. Farzad Mostashari and other patient advocates are planning a “day of action” to generate mass demand for consumer access to medical records in the wake of a plan to roll back the Meaningful Use requirement for engaging patients in their own care.

Patient advocates are planning a “day of action” to generate mass demand for consumer access to medical records in the wake of a plan to roll back the Meaningful Use requirement for engaging patients in their own care.

“I think we need to show the policymakers that they’re not just pushing rope here. We need to show that there’s demand,” former national health IT coordinator Dr. Farzad Mostashari said Sunday afternoon during a preconference symposium on patient engagement before the start of HIMSS15 in Chicago.

Mostashari and others were passionately upset by Friday’s proposed modifications to Meaningful Use Stage 2, which would roll back the current requirement that 5 percent of patients to “view, download or transmit” their electronic health data to just a single patient during each year’s reporting period.

“For the first time, I’m taking issue” with a MU rule, said Mostashari, who was deeply involved in writing the Stage 2 rules before leaving ONC in October 2013.

Mostashari drew great interest in the concept of a day of action from a vocal, palpably outraged group of patient advocates in the McCormick Place meeting room Sunday. Based on audience questions and comments, the feeling was that a small number of engaged patients today can turn to social media and word of mouth to get all of their friends and family to join them on a set day to request copies of their health records from all their healthcare providers.

“We need to create the consumer demand for this that goes beyond a Regina [Holliday] and a Hugo Campos and an E-Patient Dave [De Bronkart],” Mostashari said, rattling off the names of three well-known engaged patients.” De Bronkart has been saying, “Gimme my damn data,” as a mantra for several years, and it was suggested in conversation around the meeting room that his phrase become a rallying cry and a hashtag for this effort.

“Patients are not an advocacy group. They are not a special interest. They’re why we do this,” Mostashari said. He added that there should be no shame in being an advocate for patients.

While no date has been set, the general consensus is that the event should take place by mid-June, in time to influence HHS in its Meaningful Use changes, though Holliday is pushing for July 4. A 60-day public comment period on the proposed rule opens Wednesday.

Mostashari said that hospitals and physician practices will have no problem meeting the current 5 percent threshold if consumer demand picks up. “We will help you by creating that pull,” he promised.

De Bronkart said the healthcare industry should not be discouraged by the failure of many consumer engagement tools. “Don’t listen to anyone who says, ‘Hey, we offered this and nobody bought it.’ That is a company that is going out of business,” he said.

Creating demand for access to data is mostly a matter of raising awareness of the fact that consumers do have a right to see their medical records under the HIPAA privacy rule that has been in effect since 2002.