Patient advocates, lawmakers want to move on from repeal efforts and focus on patient-centered care

From left: Alan Balch, CEO of the National Patient Advocate Foundation; Joanne Kenen, executive editor for health at Politico; Sen. Jeanne Shaheen, D-N.H.; David Barbe, president of the American Medical Association; Aretha Delight Davis, executive director of Advance Care Planning Decisions; and Sen. Bill Cassidy, R-La., speak at an event on the relationship between doctors and patients. (Paige Minemyer)

WASHINGTON—To improve care, patients need to be included more in clinical decisions, and lawmakers and regulators can take steps to encourage shared decision-making. 

Alan Balch, CEO of the National Patient Advocate Foundation, said these stakeholders can help "bring humanity into the clinical profession." 

"There's nothing more personal than that relationship with your physician and care team," Balch said. 

Balch was one of five panelists at an event hosted by Politico that delved into the relationship between patients and doctors, and how the government impacts that relationship. He was joined by David Barbe, M.D., president of the American Medical Association; Sen. Bill Cassidy, R-La.; Sen. Jeanne Shaheen, D-N.H.; and Aretha Delight Davis, M.D., co-founder and executive director of Advance Care Planning Decisions. 

Shaheen said it's important that Congress move on from the "Groundhog Day" of the GOP efforts to repeal and replace the Affordable Care Act, so they can address long-term solutions for improving the industry. 

The conversation on Capitol Hill has been so centered on insurance that legislators "haven't been talking about these things," she said. 

RELATED: Shared decision-making boosts patient outcomes, leads to higher satisfaction rates 

Davis' nonprofit produces videos and other educational materials that providers can use to have conversations with patients about care options for advanced disease. She said the materials are written in clear language, at a fifth- or sixth-grade reading level, because patients of all education levels should be able to have a say in their medical care.

"We're really trying to change the healthcare system so that patient choices are driving our healthcare system," Davis said. 

There are more than 200 videos available in 17 languages, she said, and they are values-neutral so as not to steer patients to a particular treatment option. The group conducted close to 20 different trials and found patients are far more knowledgeable about care options, and insurers saw cost savings because patients were more informed. 

RELATED: The importance of shared decision-making in the ER 

Advance Care Planning Decisions' work is just one example of tools that are being developed to incorporate the patient voice in clinical decision-making, but the regulatory burden on doctors can make it hard to find the time to have these longer discussions.  

That includes taking a look at regulations around quality measures and electronic health records, the panelists said. Barbe noted that an AMA study found that doctors spend two hours in clerical work for every hour with patients, which doesn't allow for much time to have in-depth conversations about treatment options.

RELATED: Use questions to better inform surgical patients 

Because EHRs are provider-facing technologies, they can "get in the way" of the patient-physician relationship, Balch said.

"Physicians have very much become data-entry clerks," Barbe added.

Shaheen said that as governor of New Hampshire, she saw firsthand efforts to drive more shared-decision making through work at Dartmouth-Hitchcock Medical Center. Dartmouth's Center for Shared Decision Making has produced a number of tools providers can use for these conversations, and the data shows that physicians are more satisfied with their jobs working in this model. 

But Balch said simply using shared decision-making isn't enough, and creating a care plan that "manifests what matters" to the patient should be the end goal.

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