Patient Involvement in Decision-Making: A long way to go

shared decision-makingThis week brings some excellent reading about why and how to educate patients so they can help make better decisions about their own care.

What happens when patients get to read their own medical records? The Oct. 2nd  Annals of Internal Medicine published two editorials and results of a quasi-experimental trial of 100 primary care doctors who voluntarily provided 13,500 patient volunteers with access to their doctors’ notes for a year. To read details, read further, but some results in brief :

  • patients loved being able to read their visit report, and 75% said they were more likely to take medicines as directed;
  • doctors didn’t see increased patient anxiety, visits, or time demands.

Meanwhile, an expert panel of “thought leaders” gathered by the Institute of Medicine released an in-depth report about helping patients make better care decisions by giving them the best available medical evidence. The results, summarized in an online JAMA article  and discussed by Dr. Robert Miller for ASCO Connections, included:

  • 8 in 10 patients want their provider to listen, but only 6 in 10 say it happens;
  • 8 in 10 want to hear the full truth about their diagnosis;
  • fewer than half of patients say their provider asks about their goals and concerns.

Patients Reading Their Own Medical Chart

The OpenNotes study, described in the Oct. 2 2012 Annals of Internal Medicine , is “quasi-experimental” because participants (both patients and primary care doctors) were volunteers who had access to electronic records, and it was done in only 3 geographic areas (Boston, Seattle and Pennsylvania). But it is one of the first carefully reported observations of open-access medical records.

Before the study, doctors who volunteered and those who declined to participate said they worried about disrupted workflow and that the notes would confuse or worry patients, according to a previously published study . In striking contrast, about 99% of patients were eager to get access to their doctors’ visit notes.

After the year-long experiment, the vast majority of patients had read at least one note and about half of those completed a post-survey:

  • 77-87% of patients said open noted helped them feel more in control of their care;
  • 60-78% of those taking medicines reported they followed medication directions better;
  • only 1-8% reported confusion, worry or offense; and
  • surprisingly, 20-42% reported sharing notes with family or friends.

Among participating doctors, 0-8% reported longer clinic visits or more time spent answering patient questions via emails; and 0-14% reported spending more time writing notes.

Interestingly, about 60% of patients believed they should be able to add comments to the doctors’ notes, and 99% wanted open notes to continue and no participating doctor decided to stop providing access.

Communicating Medical Evidence to Patients for Better Decision-Making

“Traditionally, the patient’s physician generates the first opinion, with other clinicians offering second opinions. However, an opinion at least as important must also be recognized in this traditional rubric–that of the patient and family,” wrote the authors in summarizing results of an Institute of Medicine (IOM) expert report on how to better communicate medical evidence to both providers and patients.

The report resulted from an IOM initiative to understand Americans’ desire to develop their own informed opinions and be included in decision-making about their own care. They performed a nationally representative poll whose findings included:

  • 9 in 10 patients want their clinician to offer choices for tests and treatments—and not just the option that their physician recommends;
  • nearly half strongly wanted to discuss the option of doing nothing; and
  • 97% want coordinated care, but only 54% felt they got it.

The complete report includes explanations preferred by focus groups, and more.

A health care system “can deliver truly patient-centered care only when patient preferences—informed by medical evidence and provider expertise—are elicited, integrated, and honored,” the authors wrote.

In an ASCO commentary , Dr. Robert Miller, a “busy clinician in a breast cancer practice at an academic medical center,” shared his honest reactions, including the admission that “…my colleagues and I probably aren’t hitting the mark nearly as often as we would like to give ourselves credit.”

Patient Take-Away

Keep asking questions, seeking the best scientific evidence available, and remind your doctor about your own personal goals—and the need to consider your “opinion” equally as much as opinions from the clinicians on your team. And kudos to the IOM and JAMA for providing free public access to the report and summary (see links below).

Sources: Oct. 2 2012 Annals of Intern Med; Sept. 2012 Institute of Internal Medicine Discussion Paper , author summary published online Sept. 25 2012, JAMA; and Sept 30, 2012 ASCO Connection .

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