Health Equity and Care Coordination From the Patient Perspective

Oncology Clinical Pathways Congress took a decidedly more personal turn in Session 3 with “The Focus of Clinical Pathways: The Patient.” First to present in the final session of the first day was Deborah Collyar, President of Patient Advocates In Research and a cancer survivor, with “Patient Perspective in Cancer Care for Pathways and Care Coordination.”

Collyar presented a simple yet profound statement early in her presentation in regard to those diagnosed with cancer: “Patients are PEOPLE.” Patients are not numbers, nor are they subjects. They are individuals, and they are individuals who have been dropped into an entirely new plane of existence with no roadmap, dictionary, or training on how to live in their new reality.

People need useful and better treatment and care. Issues start with diagnosis (or misdiagnosis) and continue with confusion regarding each step in the care process, better explanations of treatment options, and costs, among others.

As an example, Collyar asked the assembly to imagine they’d just been diagnosed with a serious cancer. Treatment options included using drugs whose names they’d never heard before, or a clinical trial using a new form of immunotherapy whose name they’d also never heard before, and asked to choose which treatment pathway they’d like.

What is missing for patients, Collyar asked. The answer: “context.”

Every patient is different, but one thing they all have in common is uncertainty with their disease, treatment options, and outlook. Typical patients don’t know about clinical pathways for efficacy, tolerability, affordability, or streamlined treatment. The patient’s perspective is critical in planning.

So, Collyar asked in her presentation, what do patients want? Quite simply, they want answers they can use from providers who can help.

The reality is that every patient is different. Lifestyle, age, support system, insurance status, responsibilities, culture, spirituality, transportation, and attitude are all important parts of a person’s life, and each helps shape a unique set of needs. And what patients need from clinical pathways are those that are consistent yet flexible and have been created by both providers in collaboration with patients and advocates.

Collyar presented a slide featuring clinical pathways that includes the patient advocate perspective along with a table listing steps for improving patient communication bladder preservation options.

“There’s a 10-step checklist here which actually applies not only to bladder cancer but to most serious diseases,” she said. “So these are examples of things that have come out and are important.”

The slide also featured American Academy of Family Physicians Tips: Agenda Setting.

“AAFP has put together standards, a clinical pathway for communication with patients,” she said. “That’s exactly what’s needed, and this is for primary care physicians and family practice physicians. So there’s no reason why we can’t incorporate these types of tools into the clinical pathways that you already have. And that will go a long way with helping communication for people.”

Collyar said that patient-reported outcomes (PROs) are also critical to the patient journey.

“PROs, using that as an umbrella for everything that’s patient preference and experience data are imperative. That really should be a part of the whole thing,” she said.

Collyar took the opportunity to call out the National Cancer Institute for withholding vital information.

“I’m calling them out,” she said of the NCI. “What I’m hearing from the PRO specialists is that they are holding the PRO-CTCAE forms hostage, only allowing them to be clinical trials and not standard of care, and we need them in both.”

Collyar concluded her presentation by urging the audience to remember several important attributes that make people individuals and that make their respective journeys different. In discussing health equity, Collyar urged the audience to remember that “race,” “ethnicity,” “minority” do not mean the same thing.

“In health equity, sometimes it’s hard for people to remember or understand what the differences are between those words,” she said. “Every one of these words matter, so do socioeconomic status. When talking about [electronic health records], we have to make sure that bias isn’t built into them unintentionally, that we are using every single tool that we have, because that’s the only way we’re going to eliminate systemic racism, by changing things as we change each of our tools.”

Collyar concluded her presentation with a demonstration of why words matter when discussing patients, diseases, and treatments.

“My final reminder, please remember and tell your colleagues to stop saying that patients fail treatment. That’s inaccurate, it’s not true. Treatments fail patients,” she said. “And we talk about responders and nonresponders. That’s the tumor, not the person. We need to stop that shorthand language because people hear that. Patients hear that and they feel blamed for having their own disease.”