Previous studies had found great interest among Dutch rheumatology patients in having home access to their medical files.
Rosalie van der Vaart, the study’s lead researcher and a PhD student at the Arthritis Centre Twenty and the Department of Psychology, Health, and Technology at the University of Twente, says that a main concern was generating unnecessary worry for patients, especially on lab results that might not be relevant and might not be discussed during doctor visits. “That’s why health professionals resisted putting them all online, as those could create fear or stress in patients because they wouldn’t know what to do with those numbers,” van der Vaart says.
Releasing the clinical notes was also a concern. “Most of the health professionals that I spoke to were quite hesitant to release those notes because often it concerned doctors’ treatment considerations that still needed some research before a conclusion could be made,” she says.
Some of the rheumatology professionals interviewed said they might be willing to allow access but would still want “a little corner in the record” for their thoughts about the patient on topics that might be sensitive, such as adherence to doctor recommendations. Patients in the study are now being offered portal access to certain records, including medication, medication history, diagnosis, and certain lab results. The effects on patient care are being tracked.
Any efforts to expand home access to medical records is likely to continue to meet resistance. Susan Goodman, MD, assistant professor of medicine at Weill Cornell Medical College and assistant attending rheumatologist and internist at the Hospital for Special Surgery in New York, says the primary function of the note has been for physicians to communicate with one another. She says it’s unreasonable to expect a patient to understand the notes when the better part of two years of medical school is spent learning medical vocabulary.
“It’s clearly changing the function of the note,” she says. “There are certain terms that are horribly frightening.”
Thomas Collins is a freelance medical writer based in Florida.
