Over the past several years, the introduction of decision-making tools for patients from major cancer organizations, including ASCO and the National Comprehensive Cancer Network® (NCCN®), has been news, applauded as a step toward more patient-centered care and featured at many meetings. Next steps, said their creators, would be to test, validate, and improve these tools over time.
Robert Carlson, MD
Now a preliminary report from the NCCN Value Tools for Patients Working Group presents a vision of how such tools could and should evolve. It identifies basic principles on which all value tools should be based, details the gaps in current tools, and recommends ways to improve and measure their utility.
“We felt a need to understand what these value tools should look like and importantly how the patient-oriented value tools can interface with tools that are being made for medical professionals, how they would come together and where the gaps were,” said NCCN Chief Executive Officer, Robert Carlson, MD, opening the organization’s 2016 Patient Advocacy Summit.
The intent was to include the many different people who contribute to and impact a patient’s experience and decision-making.— Lisa Lentz, MPH
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Members of the Working Group ranged from patients and patient advocates to industry representatives and included clinicians, social workers, financial counselors, pharmacists, and others. “The intent was to include the many different people who contribute to and impact a patient’s experience and decision-making,” said Lisa Lentz, MPH, NCCN’s Director for Policy and Quality, who led the Working Group.
The Working Group looked at six existing value tools for patients: ASCO’s Value Framework; NCCN Evidence Blocks™; the University of Chicago’s COST, which measures financial toxicity, the Patient Advocacy Foundation’s Consumer-Based Cancer Care Value Index; the Mayo Clinic’s Breast Cancer Surgical Decision Support iPad Tool; and the Cancer Support Community’s Cancer Experience Registry.
Definition, Principles, Parameters
Defining a value tool for patients was one of the group’s first tasks, said Alan Balch, PhD, Chief Executive Officer of the National Patient Advocate Foundation, who presented the Working Group findings That definition—preliminary, like other aspects of the report—describes a “dynamic system, process, or device that assists patients in articulating their personal preferences and goals with regard to their medical condition, treatment, and related decision-making; these tools assist patients in communicating information to their providers regarding what is important to them, which in turn assists providers in delivering personalized care.”
I can’t stress the importance of feedback loops enough. Data don’t do anything if they are not actionable, and data are not actionable unless you have a feedback loop attached to them.— Alan Balch, PhD
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Furthermore, to be comprehensive, such a tool should encompass key principles and parameters. Rule number one, the Working Group said, is that a tool must capture patient preferences and values. It must also use understandable language; be user friendly; support the individual patient’s “life-flow” (ie, be able to personalize the patient’s needs and place on the treatment journey); support the cancer care workflow, including a feedback loop; and allow room for clinical judgment.
Also vitally important are methods to validate a tool and measure its utility. The Working Group suggested a number of specific ways to measure utility, such as determining whether the discussion with the provider included treatment alternatives, the pros and cons of different treatments, and the patient’s goals and preferences. Examples of other measures of utility include how happy the patient was with his or her choices after the fact; whether use of the tool fit into the clinical workflow; and how well the tool worked for the provider.
Gaps and Recommendations
None of the reviewed tools met all the criteria. There were gaps, for example in their ability to measure utility and to collect longitudinal data on use and patient outcomes. Most did not include a way to provide feedback—from patients to providers and vice versa—or allow patients to revisit their initial preferences and refine them as treatment progresses. (An exception was the Mayo Clinic’s Breast Cancer Surgical Decision Support iPad Tool, which patients can take home and use at any time.) Other gaps related to provider needs, such as training on how to use the tools and ways to balance patient needs with the time required from the clinician to engage in a meaningful conversation.
The Working Group’s preliminary recommendations are divided into short- and long-term tasks. Short-term tasks are (1) to refine the tools so they encompass the basic principles and parameters identified; and (2) to validate their utility.
Three preliminary recommendations for the long term follow: (1) to standardize the tools “to some degree” for the sake of population-based measurement and ease of use by both clinicians and patients (at the same time, a tool should be scalable, Dr. Balch emphasized, so it can be adapted to different settings); (2) to ensure tools are usable by the multidisciplinary care team (eg, patient navigators and nurses); and (3) to make tools mutually interactive for patients and providers, creating a feedback loop in both directions.
Even longer term, the Working Group envisions a library of these tools, a central repository that would, for instance, allow users to rate them, collect longitudinal data on their utility and how well they measure patient outcomes, and a feedback loop.
“I can’t stress the importance of feedback loops enough,” Dr. Balch said. “Data don’t do anything if they are not actionable, and data are not actionable unless you have a feedback loop attached to them.”
Next Steps
The next task for the Working Group is to incorporate comments and suggestions from the NCCN meeting into a final set of recommendations. “We’ll be revising, adding to the basic principles and parameters and to the gaps and recommendations,” Ms. Lentz said in an interview. Once final, the group’s report will be published in the JNCCN – Journal of the National Comprehensive Cancer Network.
Beyond that, it seems likely that value tools for patients will continue to evolve. In the past, Dr. Balch noted, other stakeholders made decisions about value on behalf of patients. That is changing with the newer emphasis on shared decision-making. But he envisions a further stage in which shared decision-making will become an integral part of the health-care system.
“The future is about an emphasis on individual patient preferences and values shaping multiple aspects of the health-care system…,” predicted Dr. Balch. This is about taking the whole concept of shared decision-making, goal-concordant care, patient-reported outcomes, and creating a system of interlocking tools around those key components, not just a single tool that addresses one component in isolation…. I would posit that a robust patient value tool could be the backbone of a health-care system … that better addresses and integrates the needs and preferences of the individual patient.” ■
Disclosure: Ms. Lentz, Dr. Balch, and Dr. Carlson reported no potential conflicts of interest.
