What is the Road Map to Consumer Clarity?

The Roadmap to Consumer Clarity in Health Care Decision Making proposes actionable models to drive person-centered care at key decision points for people facing or living with serious illnesses.

Introduction

A Message from Alan Balch, CEO, National Patient Advocate Foundation

No one questions the importance of having patients be active, informed participants in making decisions about their health care and the treatment options available to them, yet genuine shared decision making has not been widely or easily accomplished. It is critical to incorporate patient values and goals in the shared decision-making process throughout the course of the illness. Shared decision-making (SDM) requires both patients and their providers to take steps to assure that these conversations occur, that they result in goal concordant treatment plans and that their value in affecting quality of life is measured.

The Patient Advocate Foundation undertook The Roadmap project with the support of the Robert Wood Johnson Foundation to assess the current landscape of SDM and develop models that can be applied to a wide range of clinical settings across the spectrum of health care decision making. We launched The Roadmap project at our Policy Consortium in May 2017 with the publication of The Roadmap to Consumer Clarity. Our goal now is to have the National Patient Advocate Foundation work with partners, patients and providers to turn our model into reality.

This section includes materials about The Roadmap, patient, provider and expert comments, best practices and practical suggestions for implementing shared decision making. We invite you to review The Roadmap and share your comments and your experiences with us. You can sign up for updates and news about events, or indicate your interest in working with us to advance person-centered care.

What that really means is both philosophy and practice in which patients and their health care providers co-create their care. It’s a goal that is both lofty, and achievable.

— Alan J. Balch, PhD, Chief Executive Officer, Patient Advocate Foundation

“The Roadmap is about health, dignity and compassion. These are the essence of value-based care. Quality health care comes down to ‘health and caring.’ and we need to learn how to do that better, heart by heart."

— Meg Gaines, JD, LLM

Skilled Communications Workshop

December 7, 2017

A PAF/NPAF event held in partnership with
the Mountain Area Health Education Center
Asheville, North Carolina

The Patient Perspective

October 23, 2017 | What Makes a Good Doctor’s Visit?

We interviewed people facing serious illnesses for the Roadmap project. One question we asked everyone was “What makes for good interaction or communication in a doctor’s visit?”  Here is what these people told us: 

 

 “I think doctors really have to know their patients and learn, learn who they are as a person. I know that is kind of hard in the short amount of time they have, but but there are ways to do it, to find out a little about their life. That’s really important because looking down the road, it helps them make decisions and present alternatives to the patient that are more in keeping with their thought process.” Shannon, Stage IV thymus cancer. 

 

“The best interactions I have had are when we are working together as a team. She’ll ask me what’s happened since our last appointment. I’ll tell her I read an interesting article and we’ll talk about it. I can’t specifically say she asks me what my goals are, but she asks me about my life, and she understands my most important goal is not to be in agony.” Ann, Complex Regional Pain Syndrome 

 

“The most important component was trust–absolute and total trust in her doctor, and his respect for us. He understands disease and symptom management in a way we do not but at the same time, we are the ones who have to define quality of life for our daughter. So, when we said we wanted her kept home when she developed pneumonia, we made his job harder, but he listened to us and we had a shared endeavor to make it work.” Blythe, daughter died of Tays-Sachs disease

 

“When I was first diagnosed, I only wanted to see the doctor. I had stage IV cancer.My focus was completely on the clinical care, but after I had been in treatment for awhile, and I was responding to the therapy, I started to think more about my goals and what was important to me, and it was then I came to appreciate how important the nurse practitioner is. She knows what’s going on in my life and she has the time to ask me about what is happening with my kids or what we are planning to do on vacation. I realized the doctor and the NP are really a team.” Rachel F. Stage IV breast cancer 

 

“My mother’s health situation is complex. She has a primary care doctor, a pulmonologist, a neurologist and rheumatologist. It’s really important that they not only communicate with us, but that they talk to each other and coordinate her care, so they are tracking her medications and not duplicating tests–all the things that happen when you care is not coordinated.” Rachel G. caregiver for her mother with multiple sclerosis and Lyme disease

 

“I have stage IV cancer. There is no cure for this disease, so it’s a matter of managing the time I have. I didn’t want treatment that was going to be burdensome or hurt my quality of life. I talked to my oncologist about having treatments that would have the least amount of side effects, would interfere the least with my life. Knowing that you have that quality of life supports your quantity of life, and it was really important that my doctor understood that was important to me.” Amy, Stage IV inflammatory breast cancer

The Importance of the Roadmap

Interview with Meg Gaines

 

Hearing the Patient Voice

Interview with Tom Workman

 

 

Case Study: What Does Health Care Mean to Me?

Interview with Rachel Grob

 

The Roadmap and Person-Centered Care

Interview with Alan Balch

Have a question or comment about the Road Map?

Contact us here.