Physicians are beginning to understand and accept the value of allowing patients to see the majority of their health information, says a perspective piece in the New England Journal of Medicine, and have fewer worries about what patients will do with that data as they adjust to a new level of transparency. After a wildly successful OpenNotes pilot program conducted at Beth Israel Deaconess Medical Center and the Geisinger Health System, the idea of sharing progress notes and other EHR data with patients is becoming more mainstream as patient engagement turns into a key piece of healthcare reform.
While the pilot showed that the overwhelming majority of patients appreciated being able to see their health information and consequentially became more engaged in their own care, physicians questioned the ability of patients to read diagnoses information without getting confused or disturbed. Some wanted to hide portions of the material, the article says, and mental health professionals worried about how patients would react to their assessments.
“The knowledge that patients (and often their families) will have access to records affects the intent and sometimes the content of clinical documentation,” say Jan Walker, RN, MBA, and her colleagues in the article. “Writing accurately about a suspicion of cancer, for instance, can be difficult for clinicians who don’t want to worry patients unnecessarily, and addressing character disorders or cognitive dysfunction in ways that are useful to patients, consulting providers, and others who use the records requires carefully considered words. These challenges are compounded by today’s electronic records, in which the story weaving together social, familial, cultural, and medical contributors to the patient’s health and illness often disappears, obscured by templates.”
Stage 2 of Meaningful Use, with its patient portal requirement, is set to accelerate online access to data on a large scale. Despite the early concerns of providers when faced with the notion of allowing full access, no physicians involved in the OpenNotes pilot decided to end the practice once the study was over. “Overall, our experience suggests that doctors initially feel safest when they can choose what patients can see, but as they evaluate feedback from patients and colleagues and learn to discuss choices with their patients, their preconceived limits tend to fade away,” Walker writes.
As open access to EHR data continues its upward trend, providers are developing strategies to help govern what data should remain private and what should be shared. Patients may not want their family members or caregivers to access sensitive information about mental health and substance abuse, for example, but establishing a series of proxies and permissions to guard certain pieces of data is a complicated and difficult task for most provider’s IT infrastructures. Walker notes that patients are also changing their attitudes towards health data privacy, with some information ending up on Facebook and Twitter as patients begin to act on the desire for a social connection during a time of ill health.
“Health care systems will probably expand open notes to inpatient hospital services, recuperative and rehabilitation centers, long-term care facilities, home care, and other settings,” Walker predicts. “We anticipate that open records will become the standard of care. Given that more than half the patients we surveyed wanted to add comments to their doctors’ notes and approximately a third wanted to approve what was written, we expect that patients will soon share in generating content such as family and social histories and descriptions of their subjective experiences with illness. Indeed, we believe that ultimately notes will be signed by both patients and providers, as they become the foundations for planning care, monitoring the course of health and illness, and evaluating care processes and outcomes.”
