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Transparency in Medicine: Empowering Patients

By Pamela Jean
Analysis | July 20, 2010

family-around-ill-child.jpgHAYS, Kan. - Even though literature suggests that promoting active patient involvement in care may improve doctor-patient communication and clinical outcomes, in November 2009, a report published by researchers at Wake Forest University School of Medicine suggested that most patients are dissatisfied with the way they receive results of tests and want more access to information in their medical records, specifically, detailed, lay-language results from the tests. (Patients Want Faster Access to Better Medical Records)

Technology has placed vast amounts of medical information literally a mouse click away. Yet what often may be central - a doctor's notes about a patient visit - has traditionally not been part of the discussion. In effect, such records have long been out of bounds.

Now in a new report in the July 20 issue of the Annals of Internal Medicine, researchers speculate about the risks and rewards of making clinicians' notes transparent to patients.

The 2009 Wake Forest study indicated that most patients are dissatisfied with the way they receive results of tests and want more access to information in their medical records, specifically, detailed, lay-language results from the tests.

Patients believed having access to their own medical records would put them on a more even level with their doctor so that, as patients, they don't have to depend on their doctor to cure their ailments, but rather they can work as a team with their doctors and play an active role in helping themselves.

The majority of patients said they would be interested in a system where they were able to get their own results securely online as soon as they were available. The patients predicted that such a system would give them time before their next doctor's appointment to prepare questions for their doctor, learn about their own condition or disease, and get a jump start on setting up referrals if needed.

Yet, one year later, patient records tend to remain what they have always been - delayed, off-limits or difficult to read and therefore, unusable by the patients that want to take greater control of their health and recovery.

After patient encounters, doctors have long written notes ranging, "from cryptic abbreviations on an index card to lyrical essays." Yet despite a patient's legal right to read their doctor's note, few do. In a world where 57 percent of respondents to a 2009 Pew Internet Project and the California HealthCare Foundation survey said they got medical information on the Internet, the doctor's note is uncharted territory.

Some primary care doctors interviewed as part of a pre-study assessment "...anticipated both clinical benefits and efficiencies from incorporating laboratory findings and recommendations into the note, thereby obviating the need for a follow-up letter." They hoped for improved patient education and more active involvement by patients in their care.

On the other hand, some doctors "worry first and foremost about the effect on their time, including calls, letters and e-mails as patients seek clarifications, disagree with statements, or correct what the doctors consider trivial errors of fact." Others were concerned they would have to leave out important information, omit frightening diagnostic or therapeutic considerations, or that patients would not understand that 'SOB' stood for 'shortness of breath.' And some were simply embarrassed about how they write.

For some of the patients, the dialogue inherent in the process was appealing. "As more patients e-mail their doctors and use other online services, some saw open communications through electronic notes as a logical next step, enabling patients to play a more active role in their care," they write.

"Opening documents that are often both highly personal and highly technical is anything but simple," write 10 investigators, led by Tom Delbanco MD and Jan Walker RN, MBA of Beth Israel Deaconess Medical Center. They document what they have learned from preparing their 'OpenNotes' study, in which more than 100 primary care doctors are inviting about 25,000 patients to read their notes.

The 12-month trial involves doctors and patients associated with Beth Israel Deaconess Medical Center, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Seattle.

The new study led by Beth Israel will use secure Internet portals and only include notes written during the trial period. The centers involved represent a broad array of settings, from urban and suburban practices in Boston to a rural Pennsylvania health system and a county hospital in Washington state that serves many indigent patients.

While they are gathering considerable data from the patient and doctors' experiences during the study period, Delbanco and Walker say their ultimate question is whether the participants will want to "leave the OpenNotes switch on" after 12 months.

"Open notes pose many questions and probably represents the Model-T stage of the future. Can a single note serve many different audiences, and can the push toward structure and template preserve the unique attributes of each person?"

And, in the future, will doctors and patients generate and sign notes together that reflect their perspectives on the individual patient's circumstance and plans for the future?

Will patients be viewed as the primary stakeholder, rather than the insurance company? Will this finally lead to patients getting control over their own health care?

Annette J. Johnson, M.D., M.S., an associate professor and lead investigator on the 2009 Wake Forest study, explains, "Patients in our study aren't happy with that system. They want their results quickly, in writing, and they want detailed information about the test results in language they can understand."


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