Regina Holliday’s husband, Fred, died at age 39, following complications from kidney cancer -- but she remains convinced that access to his health record and better patient engagement might have saved his life.
Testifying before members of the Health Information Technology Policy Committee (HITPC) during a patient engagement hearing last week, Holliday recalled the nightmare she endured as she asked hospital officials repeatedly for the records. She was told she couldn’t have the information under law, or that it would take 21 days to compile the information, and that the printing would be costly.
When her husband was finally transferred to a new hospital, that staff requested the previous record, and the family received it almost immediately. Holliday said she read the documents -- incomplete and unorganized -- in about three hours. “I was amazed at all the errors [the record] contained.”
Family members and caregivers have in-depth knowledge of the patient. Because of that, they are a vital part of the care team, said Holliday, who has become a patient advocate since her husband’s death. “When I’m speaking of HIT, I am speaking of lives, not livelihood.”
Carol Raphaelpresident and CEO, Visiting Nurse Service of New York
Patients must be more involved in efforts to adopt electronic health record systems and other health IT, advocates told the policy committee members. As the federal government continues to establish health IT initiatives, policymakers and IT developers should consider ways to ensure that patient needs are considered. The HITPC’s meaningful use workgroup held the daylong patient engagement hearing to glean ideas and suggestions from the field that it can later bring before the full policy committee.
Patient-centered models of care use health information in the context of daily lives, M. Christopher Gibbons, a physician who is associate director of the Johns Hopkins University’s Urban Health Institute, told the workgroup. People need to see that the information is relevant to them. Technology developed around only a physician’s workflow doesn’t meet that goal.
Patient engagement also builds trust, according to Neil Calman, a physician who is president and CEO of The Institute for Family Health. If an exam room is designed so that patients are part of the interaction, with flat-screen monitors to display patient records, and doctors explain information in language that’s easy to understand, there will be fewer health disparities. “Right now, we write notes that are targeted to our colleagues, and we need to write notes that are targeted to our patients,” he said.
In focusing on patient engagement, providers can generate richer health data and understand the real objectives people have for wanting their health to improve.
Where a doctor might focus on a clinical goal of better glucose management, a patient is thinking about just being able to walk to the store without losing breath, or making it to a loved one’s wedding, said Carol Raphael, president and CEO of the Visiting Nurse Service of New York. “Their goals, remarkably enough, are nothing like our professional goals.”
The nursing organization walks patients through each step of the electronic record and evaluates their understanding before moving on to the next part, Raphael said. The records are animated to provide a better visual. “We’re not Pixar, but we’re pretty good.”
Still, while stakeholders agree that incorporating patient-generated data into electronic records, meshing information from patients with clinical data can be challenging, said Carl Dvorak, chief operating officer of Epic Systems Corp. “It turns out to be a little tricky because the patient data is not the same as the clinicians’ data.”
IT developers are continuing to work on ways to integrate the two, Dvorak said. “It would become economical if we had standards.”
Let us know what you think about the story; email Jean DerGurahian, News Writer.
PHR services present new frontier for providers
IT plays role in patient education programs to fight health illiteracy