Moving the Roadmap Forward

A Model for Action 

To be useful and provide a true Roadmap, the model must be based on four key components:

  • Any raw data generated by an action must be measured, captured and stored. Specific data that is collected should be meaningful to patients in tracking progress toward the activity’s goal.
  • Information must be delivered back to the individual, the care team and any navigators in a context that resonates emotionally and practically, rather than as just raw data.
  • The information must be usable to identify one or more paths for consideration and choice.
  • The individual must have a clear moment in which he/she can recalibrate a behavior, make a choice and act. Those action must involve shared decision making and the creation of a goal-concordant care plan.

Download: A Model for Action

Why the Roadmap Matters

Interview with Meg Gaines

Case Study

The Mayo Clinic Breast Cancer Surgical Decision Support Tool

Technology has the potential to allow greater personalization in how health care information is communicated between provider and patient. A team of specialists at Mayo Clinic, led by Dr. Sandhya Pruthi, have leveraged technology to develop a personalized decision support tool for breast cancer patients housed on patient iPads currently being implemented in their practice.

Patients access an application that delivers information about their specific diagnosis and cancer, allowing them to view content that is efficient and personalized. Dr. Sandhya and colleagues enter details of each patient case into the application, channeling the vast and overwhelming amount of information on breast cancer into what is specific to the patient’s own type of cancer and with direct links to their own care team. Because the tool is portable, patients can view and respond on their own time and when they are best able.

This personalization offers the ability to engage the patient in a series of questions and options that return to the surgical and treatment team so that they can view the patients input on a surgical dashboard. Patients are able to view surgical, non-surgical and medical options, the details of their own case, the details of their care team, and what to expect related to risk, side effects and recovery. They are then engaged in a value survey that allows them to define value and confidence in surgical decisions to communicate what is most important to them back to their care team. The application even allows for patient-defined data to be captured and shared that best reflect variables the patient feels are critical to their care. The “Breast Cancer Surgical Decision Support Tool” standardizes process while personalizing information, to empower patients to participate in the decision process and inform treatment decisions.

Moving Forward with the Roadmap

Interview with Kathy Foley

What Needs to Happen: A Manifesto

A successful Roadmap Shared Decision-Making model will:

  • Include a proactive, consistent discussion of patient values— a two-way conversation in which the provider listens to what is important to the individual.
  • Avoid significantly increasing the time involved in the patient-physician interaction
  • Utilize information sources to help patients understand the benefits, risks and costs of treatment options.
  • Help shape choices once patients understand what options are available
  • Be integrated into all key decision-making points of the diagnosis, treatment and care of every individual
  • Be linked to the delivery of key services
  • Address emotional, social and psychological as well as clinical issues
  • Respect every individual regardless of social, emotional, literacy or financial status
  • Create meaningful, measurable change
  • Include the full health care team and be understood and supported by every member of that team
  • Include and involve caregivers and support systems
  • Take advantage of new and emerging technology and personalized platforms for getting and understanding information and treatment planning
  • Build in accountability/feedback mechanisms and provide real-time data as part of health care delivery
  • Include patient reported outcomes on quality of life issues
  • Include outcomes and quality of life measures that will help others share health care decisions

My Hope for the Roadmap

Interview with Tom Workman

“Half of getting to the goals of the Roadmap lies in getting people to stop working in isolation. There are lots of excellent initiatives, but they are like separate islands. We need to bring these perspectives, to see everyone’s pieces begin to merge into a land mass.”

— Tom Workman, PhD

Case Study

The GIST Life Raft Group Patient Registry

The GIST Patient Registry illustrates a comprehensive strategy for executing multiple roadmap recommendations for a specific patient population, including increased consumer engagement, transparency in providing information about benefits and risks of treatments as identified by patients, improved education for patients to facilitate more effective communication, use of innovative platforms to collect and share information, and systematic measurement and utilization of patient reported data.

Created by the Life Raft Group, the GIST Patient Registry serves as a connector and source of information for gastrointestinal stromal tumor (GIST) patients, caregivers and both the clinical and research communities. All information in the registry comes directly from patients or caregivers and is returned to patients with the understanding that timely knowledge and information is key to achieving better care and quality of life. The registry contains over 15 years of self-reported and clinical data encompassing 35 years of patient history crossing institutional boundaries. The Patient Registry has 1,703 patients from 67 countries with the youngest patient diagnosed at 5 and the oldest at 92 and represents 12 different mutational types.

Components of the GIST Patient Registry that achieve roadmap recommendations include:

Patient Registry Team. Patients and caregivers are part of a team inclusive of staff and volunteer navigators. The team approach facilitates one-on-one discussion of treatment options, side effects management and dietary advice, assistance for the patient in preparation for medical appointments and direct connection to others through GIST Patient Match Program.

Care Management. Offers a portable record to track care history, provides access to care resources including specialists and clinical trials, and allows comparative data of individual patient data to the larger GIST community to inform individual care decisions.

Education and Training. Team members are offered online patient training courses, specialized webinars and content driven by patient-reported data, all tools to empower team members to become their own advocates and drive shared-decision making.

Research and Consultation: Offers a GIST collaborative tumor bank for facilitation of patient contribution to research and a virtual GIST Tumor Board for experts to discuss eligible patient cases with treating physicians to drive better communication and care.

The data collected is used to examine questions that are not being answered quickly enough by current trials or that are not being evaluated in clinical trials and to monitor the latest treatments for early indications of a response. Examination of these trends lead to outputs and offers real world evidence to patients on questions that can inform decisions, including how many patients are treated with the brand or generic form of a drug, to the average number of tissue samples donated per patient for research.

This patient-powered medical registry enables patients and caregivers with tools to improve their own care, contribute to research, and improve clinical understanding and communication about their rare disease on a broad scale.

Case Study


PREPARE ( is an online, interactive care planning decision aid developed in 2012 by researchers at the University of California San Francisco and the Veterans Health Research Institute. This decision-making tool extends beyond the advance directive to include surrogate selection, specific questions which help users to identify their own values and preferences, and models for how to communicate those preferences to providers and family or other caregivers.

The PREPARE learning module’s custom-configured approach accommodates variation in patient experiences, skills, goals, and values. Plain language written on a fifth-grade reading level is intended to meet the needs of underserved populations and those with limited reading or computer literacy and/or visual or hearing impairment. English and Spanish text with audio voice-over demonstrates a 5-step process for deciding not only how to make medical decisions, but also how to make other decisions which impact treatment and quality of life outcomes. These include identifying values, recalling previous experiences with serious illness, identifying health situations which would be intolerable (where death would be preferable over treatment), considering how values change over time, and deciding how much decision-making flexibility to allow a surrogate.

Multiple scenarios depicted through video enactments provide viewers with a variety of scripts which may apply to their own situation and feelings. Video demonstration also provides patients with models for how to ask questions about benefits, risks, treatment options and effects. PREPARE’s interactive features also allow users to develop an action plan, and to print and store a recorded summary of preferences which can be shared with caregivers and providers and/ or accessed from the website at a later date.

Download: Prepare for Care

“The Roadmap will drive PAF and NPAF’s efforts and our programs for the foreseeable future.”
— Alan Balch, PhD


The goal of creating this Roadmap is to provide the framework for reforms that put people at the heart of healthcare through delivery of person-centered care. It provides stakeholders with a starting point, a basis on which to decide what specific role each can play, and what specific actions will have the greatest impact in the setting in which they work. It is our intention to carry this forward, in multiple settings and with many partners to advance our shared goals for making person-centered care an integral part of the health care delivery system.