Patients and Partners

Engaging patients in their own care to create better outcomes and generate cost savings.patients and partners

It’s old news that patients want the same type of information about health care that they expect from other major products and services.

Just as they want to be able to take it for granted that their car will perform reliably, that they can make informed decisions about the cost of a meal, and that they will have enough legroom on their flight, consumers are increasingly demanding the same level of information and involvement when it comes to their health.

At the 2014 National Quality Forum (NQF) Annual Conference and Membership Meeting, Leah Binder, president and CEO of the Leapfrog Group, a health care advocacy initiative (and featured speaker at AMCLC), pointed to a national movement around this issue, citing patient demands for clarity. “[Health care prices] don’t make any sense from the point of view of the patient,” she said. “In fact, they don’t make any sense from the point of view of people in the health care industry.” If health care providers don’t understand why a procedure at one hospital could cost ten times as much as another hospital, the concept is totally foreign to patients, said Binder. While this patient empowerment movement is not a breaking trend, recent research has confirmed the value of engaged patients, pointing to better outcomes and cost savings associated with more engaged patients.1 Stay up to date with health care pricing transparency by following the hashtag #hcpt on Twitter.

Information Revolution

A key aspect of engagement is providing meaningful information to patients about their care. The topic took center stage at NQF, where the theme was “Making Sense of Quality Data for Patients, Providers, and Payers.” Health care professionals and quality experts gathered to discuss the importance of quality measures for improving our health care systems and to learn, debate, and collaborate on ways to make health care quality information meaningful to and empowering for patients. In their conference address, Senator Tom Daschle and former Utah Governor Michael O. Leavitt challenged the audience to “stop fiddling with the little gears of quality measurement and discover the big ones and start turning them. Because that is all the consumer has interest in.”

One of the most valuable sessions featured Dave deBronkart, a patient whose incidental findings led to a diagnosis of stage 4 kidney cancer with a median survival of 24 weeks. Seven years later, a very much alive deBronkart came to NQF to share the story of his journey to understand his condition and treatments. “Some people think that patient empowerment is anti-medicine. It is not. It’s about patients being partners,” said deBrockart. His story highlighted the need for providers to share data and information with our patients to engage them in their health care for the most positive outcomes.

Differentiated Data

To empower patients like deBronkart, publicly reported data must be appropriate for the consumer but also need to be relevant, credible, and actionable to the provider of health care services. This means that the metrics must be developed through an evidence-based consensus process that seeks input from a broad spectrum of stakeholders. Metrics must account for population differences, and the consequences of a poor grade need to be proportionate to the quality of the data and the ability of the graded entity to influence its outcomes. Care must be taken not to create perverse incentives to game the system or put in place systems that penalize essential safety net providers who are not able to improve as rapidly as those with greater resources. Because the public disclosure movement is in its early stages, it is to be expected that early attempts are incomplete and less than consumer friendly. For example, we’ve seen a mixed reaction to the recent release of Medicare physician payment information. Subjective rankings, not surprisingly, differ depending on the methods and values of the raters.

On the other side of the equation are the patients. When disclosing medical costs to the public, transparent price lists and fee schedules are required in some circumstances. Cost-of-care metrics for doctors, medical groups, and hospitals are increasingly available and are being used by patients to choose comparable quality at a lower price. The situation is intensified by a jump in high-deductible plans, which now cover one in five U.S. workers. With so many patients now paying for their care out of pocket, providers are increasingly being asked for prices up front. While Binder pointed out that pricing is not always readily available or easily understandable for patients, providers need to respond to public demand for this information. “Price transparency is coming,” she said. “And it’s very important for us in the health policy arena to facilitate that happening.”

By Judy Burleson, MHSA, and Lyndsee Cordes

Judy Burleson, MHSA, is ACR senior advisor on quality metrics.


1. Hibbard JH, Greene J. “What the Evidence Shows About Patient Activation: Better Health Outcomes and Care Experiences; Fewer Data on Costs.” Health Affairs 2013;32(2):207–14.

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