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NPAF Fall 2018 Policy Consortium

Thinking about the Costs of Care in Shared Decision Making

Thinking about the Costs of Care in Shared Decision Making

The theme of NPAF’s Fall Policy Consortium, held November 29, 2018 at the Newseum in Washington, DC, was “Thinking about the Cost of Care in Shared Decision Making.”   While both patients and providers acknowledge that these conversations play an increasingly important role in shared decision making, it is clear that there is a great deal of work to be done related to when and how they take place, who is responsible for initiating them and what tools are required to move forward in this critical area.

This Policy Consortium brought together a diverse group of patients, advocates, researchers, providers and policy makers to talk about the impact of financial toxicity on care and ways to “normalize” conversations about cost. The Consortium built on the work that the Robert Wood Johnson Foundation is funding in this critical area and that of the Patient Advocate Foundation. Investigators who conducted RWJF supported exploratory research on cost of care conversations with vulnerable populations and integrating these conversations into the clinical workflow as well as partners who are working to disseminate this information were among the presenters and attendees.


Five Key Takeaways

  1. Patients and caregivers want to talk about the costs of their care but face a range of barriers in having these conversations
  2. The financial impact of care includes the direct costs of that care but also extends to indirect and life-style related issues
  3. Physicians and providers are increasingly aware of the need to discuss costs and willing to do so, but often lack the training and tools to have these conversations
  4. Cost of care conversations are more likely to happen when physicians initiate them–and generally do not take very long
  5. The key to assuring that costs of care conversations occur is “normalizing,” them–developing the procedures and systems to make these discussions part of the shared decision-making process

“We need to think about financial toxicity in exactly the same way we think about other side effects. As you know when you document a side effect of treatment, you have an obligation to treat that side effect. The same is true for financial toxicity.”

- Alan Balch, NPAF/PAF Chief executive officer

Specific Medical Costs Concerns

Data from the Patient Advocate Foundation Surveys on Cost-of-Care

Importance of Medical Care Costs

Data from the Patient Advocate Foundation Surveys on Cost-of-Care

Discussing Costs with Medical Providers

Data from the Patient Advocate Foundation Surveys on Cost-of-Care

Knowing About Out of Pocket Costs

Data from the Patient Advocate Foundation Surveys on Cost-of-Care

Concerns of Patients When Discussing Costs

Data from the Patient Advocate Foundation Surveys on Cost-of-Care

Facing Cancer and the Costs of Care: The Patient Perspective

“Even if you have good health insurance, as I did, the costs of care both in terms of the treatment itself and the impact on your life are overwhelming. Over the years, the out of pocket costs, the out of network costs, the costs of moving to New York for my transplants and the costs of the follow up treatment have amounted to hundreds of thousands of dollars for me and my family.”

- Suleika Jaouad, Keynote speaker



Watch the Full Session: A Conversation with Suleika Jaouad and Gwen Darien



Talking About the Cost of Care: A Conversation

“These bills started to mount up, forty, sixty, eighty thousand dollars, and I basically started to think, I can’t afford to live, and I decided to stop treatment.”

- Tom and Liz Ema, Patient and Caregiver

Highlights of the Ema’s talk, Talking about the Cost of Care


Why are Cost of Care Conversations Important?

“So often, what we see is a tradeoff. We have a huge problem with non-adherence. We have a huge problem with patients missing appointments. We see people deciding whether to pay their rent, or their utilities or take their medicine.”

Tammy Taylor, DNP, FNP-BC, Nurse Practitioner



  • Gwen Darien, Facilitator
  • Shirley Bridgett, Patient
  • Jerry Krishan, MD, PhD, University of Illinois, Chicago
  • Susan Perez, MPH, PhD, Consumer Reports
  • Tammy T. Taylor, DNP, FNP-BC

Talking About Cost of Care: A Physician Perspective

“Twenty-five percent of employers in this country only offer high-deductible insurance plans right now and according to a recent survey another quarter are considering offering only these plans. It makes it all that more important to talk about out of pocket costs with patients and help inform their decisions."

- Peter Ubel, MD, Duke University


Incorporating Cost of Care Discussion into the Clinical Work Flow

“The initiative to have these conversations often has to come from the patient or the caregiver, but you have to have the wherewithal to know you can ask these questions. People are uncomfortable talking about money, but then when you have to mix it with medicine, that’s a whole ‘nother thing altogether.”

- Mary Jackson Scroggins, Patient Advocate


  • Mary Jackson Scroggins, Facilitator
  • April Barbour, MD, MPH, FACP, George Washington University School of Medicine and Sciences
  • Kim Erwin, MDes, University of Illinois
  • Rita Matthews, PAF Case Manager
  • Amy Russell, MD, Asheville, North Carolina
  • Joshua Seidman, PhD, MHS, Avalere Health