Despite doctors’ fears, recent studies on physician-patient information sharing indicate there is no such thing as “too much information” for patients.
“There is a long tradition of secrecy in healthcare,” according to Dr. Chen-Tan “CT” Lin, chief medical information officer at the University of Colorado Health In Aurora, a nationally recognized expert in researching personal health records and online patient communication and a board certified internist.
“In the past, medical records and chart notes were memory aids for physicians. They may indicate reminders to bring up uncomfortable topics (e.g.: “I suspect cancer, but I’ll do some testing first before I say anything”), private observations of the patient’s appearance, and other subtle clues about the patient’s overall mental and physical health,” Lin told HealthBiz Decoded.
Doctors were also leery of sharing their notes in fear that the patient would bombard them with questions about terminology and the implications of test results.
“The open notes project was completed last year, showing that for thousands of patients and many dozens of doctors, in primary care, that it was both practical and satisfying to patients to release test results,” Lin said. “They also showed in his project that it did not cause a deluge of telephone calls or upset patients.”
Releasing test results still isn’t widespread, but it is included in Meaningful Use criteria so adoption is accelerating, Lin said. Still, most people don’t take advantage of their legal right to see their medical information.
“In our study, we demonstrated that less than one percent of patients take advantage of their right to request medical records and view them,” Lin said. “On the other hand, if you ask patients in a clinic waiting room, more than 80 percent would like to see their records.”
Having to go to a separate records building and photocopy paper records is probably what keeps most people from checking them out, he said.
In reality, the whole process of care seems to run smoother when patients access their information.
“We found that, in addition to increased patient satisfaction, patients felt more trust in their physicians, patients showed increased adherence to therapy; they told us that ‘I can see behind the curtain’, ‘I can share results with my family’, ‘it was easy to recover lost medications from lost luggage when I was traveling,’” Lin said.
Open access to notes has been tested in cardiology and primary care practices so far.
“I’m sure that there are many subspecialists and possibly surgeons who are still anxious about revealing test results and their own progress notes to patients,” Lin said. “Personally, I feel like the time has come for this increased transparency, and now there are multiple studies demonstrating its feasibility.”
“Many doctors believe they are already doing a good job of providing ‘enough’ information – or at least ‘enough’ based on what they believe their patients can process in a relatively compressed clinical encounter (15 minutes in primary care settings),” according to Lynne Robins of the Department of Biomedical Informatics at the University of Washington in Seattle.
“Increasingly patients need to/are expected to take a more active role in their health care; the evidence suggests that when they do they experience better health outcomes. Information sharing is a piece of the puzzle,” Robins told HealthBiz Decoded by email.
And the puzzle may be coming together, thanks to Meaningful Use regulations.
“I believe the majority of physicians will release test results routinely to patients within the next two to three years,” Lin said. “However, I think ‘open notes’ will probably take substantially more time, before there is widespread adoption.”