The following is an edited transcript of an MDAdvantage podcast with Steve Adubato, PhD, and Ellen Miller-Sonet, Chief Strategy and Policy Officer at CancerCare, recorded on July 1, 2021. In this interview, Ellen Miller-Sonet talks about the origins of CancerCare, its services, the What Matters to You program, the communication gaps in cancer care and the free resources available to patients and physicians.
ADUBATO: Let’s start off by getting a better understanding of CancerCare and its origins.
MILLER-SONET: CancerCare was founded in New York City in 1944 to help patients with advanced cancer pay for treatment. Psychosocial support services were started in 1953. We added telephone workshops in 1990, and then our toll-free help line really took us to a national audience in 1994. Currently, our services include case management, counseling and support groups over the phone, online and in person. We also offer educational workshops, publications and financial and co-pay assistance. All our services are free of charge and provided by master’s-prepared oncology social workers and leading cancer experts. I should add that this year we are slated to provide more than $70 million in financial assistance to patients.
ADUBATO: In addition to all of this, CancerCare has a program called What Matters to Me. What is that, and how did it get started?
MILLER-SONET: A few years ago, we fielded a large national study of people with cancer and focused specifically on their experiences from diagnosis through to survivorship. One of the most startling findings was that people are planning and agreeing to treatment plans without nearly enough information about how they will affect their lives and their families; this led us to establish the Patient Values Initiative, which is a multi-faceted program that intends to reframe the national healthcare policy dialogue to include what’s important to patients and their families and to incorporate patients’ values and priorities into treatment decision-making models.
Every day, there are new discoveries that evolve and improve cancer treatment. Therefore, patients and their physicians really have more options than ever, and these options can be discussed in the context of a patient’s personal preference and priorities, which might influence the choice of treatment approach. As part of this program, we did extensive research among oncologists, oncology nurses and patients to probe their communications regarding patients’ priorities and their perceptions of how important patient priorities are in treatment planning. This led us to develop a tool called What Matters to Me.
“There’s an international movement to change the dialogue between a clinician and a patient to talk about what matters to the patient instead of what’s the matter with the patient.”
ADUBATO: As I understand it, the What Matters to Me program changes the question that a clinician may ask a patient from “What’s the matter with you?” to “What matters to you?” Do I have that right?
MILLER-SONET: Yes. There’s an international movement to change the dialogue between a clinician and a patient to talk about what matters to the patient instead of what’s the matter with the patient. This makes the relationship much more relational and much less transactional. It’s a movement that’s spread to more than 49 countries. It’s been integrated into the work flows in all different kinds of healthcare settings, hospitals, primary care, behavioral health, substance use treatment. Clinicians say it makes their work more fulfilling, because they actually get to know their patients in new ways, and it also helps to stave off some of the physician burnout that so often happens from these very transactional relationships. The program trains physicians to help people, not fill out forms.
ADUBATO: As a communications coach, I’m aware that we often think we communicate better than we really do. You have published your research on the disparity between clinician perceptions of patients’ preferences and patients’ real quality-of-life preferences and priorities. What are some of the most significant communication gaps you’ve seen when developing a plan of care for a newly diagnosed cancer patient?
MILLER-SONET: There are huge information gaps. Patients really don’t know much about the impact cancer treatment will have on their lives and their families, so they agree to a treatment plan without knowing whether they’ll be able to work, the kind of care they’ll need at home, the emotional or cognitive impact of treatment, and very importantly, they have no idea what it will cost them. You wouldn’t even buy a new car without test driving it and asking how much it costs.
ADUBATO: So, there are these gaps in terms of what the patient wants and needs, and what sometimes is communicated to that patient from the clinician’s perspective.
MILLER-SONET: Yes. But sometimes, even when clinicians discuss these matters, patients and caregivers are so anxious and afraid that they can’t really retain all the information. They may not understand the jargon. They may not understand the context. We really think that clinicians should post all of this information after that meeting, whether they put it on a patient portal or provide it in printed form. When the parade of horribles is dancing through your head at 2:00 in the morning, you want to be able to refer to what the physician actually discussed.
ADUBATO: The physician practices in this area clearly need support. How can CancerCare support physician practices?
MILLER-SONET: We have an extensive library of patient-education publications. They’re downloadable; however, we also mail them free of charge on request in quantities to physicians’ offices, hospitals and cancer centers, so that they can distribute them to patients and caregivers. They’re developed by our social workers and leading oncologists. They’re written at a health-literate and easy-to-read level, and many practices find these materials useful for their patient-education library.
We also provide education workshops, about 70 a year, that focus on very specific topics, like emerging treatments for metastatic melanoma, for example, or updates on CAR T-cell therapy. These are live workshops that allow viewers to email or call in questions; then the programs are archived. We also provide psychosocial support and case management for free to patients. Therefore, physicians’ offices often refer patients to us.
ADUBATO: What kind of feedback have you gotten from physicians in connection with the What Matters to Me program? How will you and your colleagues at CancerCare measure the efficacy, the effectiveness and the impact of the initiative?
MILLER-SONET: We are doing a feasibility study at the Montefiore Einstein Cancer Center in the Bronx, New York. We have exposed the tool to 29 oncology clinicians and found that 90 percent said that patients’ preferences and priorities affect treatment recommendations at least somewhat. Regarding the What Matters to Me program, 95 percent said they somewhat or completely agree that the tool enhances patient communications, and 90 percent somewhat or completely agree that the tool is useful.
“We have exposed the tool to 29 oncology clinicians and found that 90 percent said that patients’ preferences and priorities affect treatment recommendations.”
This is important because many physicians don’t really know how to communicate with patients regarding their personal priorities, especially when they first meet. It’s a short meeting. They want to cram in all of the clinical information, and they’re afraid that personal conversations will take up a vast amount of time and become very emotional. They don’t know the questions to ask. Thus, this tool can really act as an icebreaker and a very efficient way for a clinician to know what’s important to the individual patient who’s come in for treatment.
The program questionnaire is also being exposed to patients, both English-speaking and Spanish-speaking, so that we can collect their thoughts on how easy it is, whether they would fill it out, what it makes them think about and do they understand it. We’re including it in new patient packages where, hopefully, patients will fill it out, and it will start to have an impact in their appointments with their physicians when they’re just starting treatment.
ADUBATO: It sounds like this program has tremendous potential to have a really positive impact. Are there any barriers that you and your colleagues face in implementing the program?
MILLER-SONET: Absolutely. Clinicians are so protective of their time. One doctor told me that adding a 90-second task to the workflow was too much. Although I’m convinced that this tool will actually save time, it can be seen as more work, so that’s certainly one barrier. Another is figuring out how to incorporate the worksheet into the electronic health record (EHR) so that all team members have access to it; the EHR is hallowed ground, and it has the reputation of being impossible to alter. But I’m working with a software provider that develops plug-ins that are compatible with all of the known EHR platforms. We’re hoping that we can easily penetrate the work flow that way. Again, all of this is free of charge from CancerCare.
ADUBATO: If a patient or provider is looking to connect with your organization, what is the easiest way to do that?
MILLER-SONET: We’re at CancerCare.org. We have a large website with all kinds of information for patients. All our education workshops are archived. All our services are described. The What Matters to Me program information is in the policy and advocacy section with information about how to refer patients. Our Hope Line number is 800-813-HOPE (4673).
ADUBATO: I can’t thank you enough. You’ve been engaging and interesting and informative, and we wish you and your colleagues at CancerCare all the best.