IOM Releases Partnering with Patients Workshop Proceedings

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DawncropJust a couple of weeks ago, the Institute of Medicine (IOM) released the proceedings of a public workshop they held in February of this year entitled, “Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement.” Hosted by the IOM’s Roundtable on Value & Science-Driven Health Care, with support from the Gordon and Bette Moore Foundation and the Blue Shield of California Foundation, the workshop’s goals were to identify and explore issues, attitudes, and approaches to increasing patient engagement in our current health care system. Attendees from a variety of backgrounds – medical practitioners, clinical researchers, health care services researchers, regulators, payers, and representatives from patient communities — discussed topics that ranged from shared decision-making around treatment and better communication during care, to securing the best value for health care dollars and the use of data generated during the provision of medical care.
While the proceedings do not contain a formal set of recommendations, they will undoubtedly enlighten policy makers about the great benefits associated with enhanced patient engagement in our health care delivery system: “better outcomes, lower costs, faster progress.”

Key messages from the proceedings include lessons that many of us dealing with chronic conditions know all too well. Some of the highlights I thought were noteworthy are:

  • To truly improve, health care must partner with patients and families at all levels – at the individual care level, at the health care administrative level, and within the research community. Suggestions included everything from allowing patients’ families to activate rapid response teams in a hospital and sharing medical notes with the patients and families, to the use of patient navigators, engaging patients in hospital advisory councils, and making shared decision-making a covered benefit.
  • Connectedness, continuity, and trust come from a culture that fosters patient engagement. Many of us have a mental image of the TV character, Dr. Marcus Welby, when we think about our ideal for the kind of doctor we want to have. While doctors may no longer make house calls, patients still want to know that someone where they get their care knows them and understands their medical history. Studies show that this feeling of connectedness and continuity of care is greatly enhanced in a clinic setting when patient-centered team-based care is provided.
  • Shared decision-making, where the patient and the doctor work together to select tests and treatments, actually only works when patients feel like clear information about options is provided. In fact, a recent study done involving low-income Californians showed that only 6 in 10 patients said they would like an equal say in decision-making with their care provider. However, this number jumped to more than 8 in 10 when they were told that the doctor would explain options to them with information that they could clearly understand. The difference was even more prominent when the patients were non-English speakers or when they did not have a high school degree.
  • Demographics make a difference. Younger patients and women tend to be more inclined to play an active part in shared decision-making. In fact, one study showed that the most common number of questions asked by men in a 15-minute office visit is zero. For women, that number is six.
  • Patients were described as “the greatest untapped resource in health care,” particularly when it comes to sharing personalized clinical data for improving population health through research activities. “In protecting patient privacy and prerogative, we have left patients unprotected with respect to the loss of evidence that would otherwise be generated.”

So, how did the attendees suggest that patients be empowered to engage in and direct their own care? Ideas discussed at the workshop included developing “care coaches” or a “patient support corps;” creating and implementing decision aids (such as self-screening surveys) for patients to use; experimenting with shared medical appointments (where a group of patients with the same condition see a physician together); and establishing “centers for planned patienthood.”

Again, no consensus was developed at the workshop around recommendations for action. In fact, one of the take-away’s was a suggestion to hold a follow-up meeting focused on priority-setting from among the ideas discussed. I would argue that the panelists missed the opportunity to discuss how to better utilize patient advocacy groups like the Hydrocephalus Association to meet the stated goals. Still, the fact that the workshop was held at all indicates a growing recognition at the highest levels that health care “business-as-usual” isn’t an option. Moreover, the dialogue that occurred and the report that was generated will provide much needed corroboration and validation for change going forward.

The IOM is an independent, non-profit organization that works outside of government to provide unbiased and authoritative advice to decision makers and the public. Established in 1970, it is the health arm of the National Academy of Sciences, which was chartered under President Abraham Lincoln in 1863. Since then, the National Academy of Sciences has expanded into what is collectively known as the National Academies, which is composed of the National Academy of Sciences, the National Academy of Engineering, the National Research Council, and the IOM. The IOM’s aim is to help those in government and the private sector make informed health decisions by providing evidence upon which they can rely. It regularly undertakes studies as a result of mandates from Congress, or requests by federal agencies and independent organizations. Each year, more than 2,000 individuals volunteer their time, knowledge, and expertise through the IOM’s consensus committees, forums, roundtables, and standing committees, all designed to facilitate discussion, discovery, and critical, cross-disciplinary thinking.

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