The Roadmap Model
The Roadmap Architecture
The Input Output Model
Information alone does not drive consumer behavior or shared decision making. Meaningful shared decision making requires an Input Output model designed specifically to provide a feedback loop that identifies and responds to patient preferences. This model must be able to acknowledge and accommodate the wide variation inherent in-patient goals and preferences while still standardizing the process by which the information is customized.
The Roadmap Methodology
● Extensive quantitative survey data
● Interviews with 16 individuals who have faced serious illnesses and become advocates
● Five focus groups with patients facing serious illnesses
● Extensive input from the Stakeholder Advisory Group
● Identification of “Best Practices” and models
● Literature search
The Roadmap Principles
● What matters will vary from patient to patient
● What matters will change and needs to be reassessed on a regular basis
● Patients and caregivers need timely, usable information about the costs, benefits and risks of their care
● Understanding the patient perspective means hearing both the individual patient voice through patient-provider interactions, and the collective voice through data collection and analysis
● ALL patients are capable of making shared decisions about their care--regardless of their health and social status or health literacy.
● ALL patients expect and deserve respect and benefit from a collaborative, cooperative relationship with their health care team.
The Roadmap Core Beliefs
● Patients play key role in driving systemic changes — beginning with self-advocacy, extending to active efforts to educate other key stakeholders.
● Patients are part of change process, not simply objects of that change
● Ultimate goal: patients and their provides co-create health care plans that meet clinical objectives while honoring individual values
The Person-Centered Care Platform
Treating the person beyond the disease throughout the care continuum by prioritizing:
- Skilled communication that invites patient and caregiver input and expertise about what is important to them as an essential aspect of treatment planning and services delivery
- Equitable access to high-quality, needed treatment and support services that support the best quality of life and person-centered outcomes while making the benefits of state of the art care available to everyone
- Quality of life and supportive services needs assessment, including documentation in the health record as part of disease directed standard of care, clinical pathways, professional guidelines and quality improvement initiatives.
- Actionable data that is meaningful to patients used as the basis for feedback, measurement and payment. This means data that incorporates the dynamic and personal nature of patient preferences and values and is fully integrated into the decision-making care planning process.
Kate: Value is What Works Best for Me
Kate was diagnosed with relapsing remitting MS at age 35. She was single, a successful woman who wanted a central relationship in her life. Initially she feared that her illness would make that impossible and was deeply concerned about life as a disabled person. She has since learned to live with her MS and to use her skills as a video producer and writer to become an advocate for other people facing serious illnesses. She developed and runs a special website, My Counterpane (http:// www.mycounterpane.com) in which patients can tell and share their stories — and she has married and had children.
In the course of her treatment, she has undergone both conventional and alternative therapies. “I think value for me is really seeking to understand what works best for me. It’s this whole sense of finding what feels good and knowing what works for me may not work for other people. If you give people the right channels to explore their own power, I think there is tremendous value in that, that has nothing to do with the health care system. “I’m really hopeful that this holistic space is beginning to open and I know it is in the MS space. That can mean opening up a position for a nutritionist or being able to listen to things that don’t necessarily fall into your clinical training. I just feel so passionate
“Fewer than half of patients believe that clinicians understand their goals and concerns, and many people who are seriously ill say their medical care is not aligned with their preferences. Nearly half of the time when doctors say they discussed prognosis and likely outcomes, patients say there was no such conversation."
— Dhruv Khullar, MD, New York Times, September 16, 2016
What I Needed from My Doctor
Interview with Rachel Fournier
SHARE Approach Workshop
The SHARE Approach Workshop Curriculum is designed and promoted by the Agency for Health Care Research and Quality (AHRQ) to foster health decisions that take into consideration evidence-based information about options, provider knowledge, and the patient’s values and preferences.
Two commonly cited barriers to this shared decision making (SDM) model are over-worked physicians and insufficient provider training. The SHARE Approach addresses both of these barriers through curriculum materials which facilitate a team-based approach to shared decision making in person-centered care during the clinical encounter, with emphasis on the provider’s five essential steps to SDM:
- Seek the patient’s participation
- Help the patient explore and compare treatment options
- Assess the patient’s values and preferences
- Reach a decision with the patient
- Evaluate the patient’s decision
Download graphic: The SHARE approach
The one-day training program, available online and free of charge, provides support for organizing clinical practice to effectively engage patients in meaningful dialogue. Four content modules include detailed downloadable facilitator guides, training tips, webinars on topics related to implementation of SDM, a toolkit of reinforcing materials, checklists for implementation, forums for sharing experiences, and success stories to model effective implementation. Quick reference guides present a compendium of information to:
- Identify points at which patient-centered outcomes research resources can be introduced
- Provide sample dialogue
- Identify signs of decisional conflicts
- Offer tips for overcoming communications and literacy barriers
- Explain how to convey meaningful numbers and understandable risk information
- Highlight the value of teach-back techniques; and
- Offer assessment tools for measuring the health organization’s cultural and linguistic competencies.
In addition to its emphasis on preparing the entire medical team to engage with the patient as the center of SDM, the SHARE Approach also offers support for helping patients to clarify their own values and preferences, and for understanding why those preferences are especially critical when evidence-based assessments of treatment options don’t identify one clearly superior treatment.
Creating Conversations that Matter to Patients
Three Critical Factors To Developing Communications Skills
- Is the information available?
- Can patients access it?
- Does it cover critical issues related to costs, benefits and risks?
- Can patients understand and use the information?
- Is it culturally sensitive?
- Is the information timely–does it match what is happening?
- Is the information presented in a way that is personally meaningful to the patient and caregivers?
- Is there a feedback loop that allows patients and the health care team to evaluate the outcomes of their discussions?
- Is there a way to share knowledge and experience with others?
“For person-centered care, we need to recognize the asymmetry gap in information. Physicians know the clinical information. Patients know everything about their lives and their values. Bridging the gap requires training on both sides. It’s not a natural process.”
— Lewis Sandy, MD
Why Patients and Physicians Need Communications Skills
Interview with Rebecca Kirch
Keeping an Open Channel of Communication for Caregivers
Interview with Rachel Grob
“We need to set expectations from the first visit and gain some understanding of how people want to participate in the decision making about their care. That has to be balanced with not overwhelming them with too much information. We have four questions that we ask every time we see a patient. What are you hoping for? What is important to you? What are you most worried about? What brings you joy? That tells you a lot about the patient.”
— Lillie Shockney, M.A.S.
What Patients Want from Communication with Their Doctor
Interview with Kate Gallagher
One of every four survey respondents felt the opportunity to get valuable information about what was important to them was “completely absent” from their discussions with their providers.
55 percent or survey respondents indicated they like to partner with their doctors and make treatment decisions as a team
What we learned during in-depth interviews
- The word, and concept, of “value” has multiple meanings and is not well understood by most patients. We need better ways of talking about and defining value to encompass:
- What is important to the patient at this time
- What are the evidence based benefits and risks of the treatment/care
- What are the direct and indirect financial issues associated with this treatment
- Truly patient-centric care can result in a positive experience even when the medical outcome is poor.
- Advocating for patient-centric care requires skills. For many people, these skills are acquired and developed during the course of treatment and improve with the length and depth of the experience.
- Caregivers are critical, but are often neglected in terms of delivering support.
- Palliative care is essential and must be integrated into the treatment plan from the beginning. Both patients and providers need better understanding of its meaning and value.
- “Good” experiences are those in which the medical team includes discussion of what is important to the patient at every stage of treatment and care.
- While patients want a coordinated team approach, having one doctor who is at the center of their care, and with whom they have a trusted relationship is critical.
- There are often numerous critical decision making points throughout the course of the illness, but the most vulnerable and difficult time often comes at the point of diagnosis.