Inspiration & Science

Julie’s story

Our late colleague Julie Martin, RN, MSN, had a unique understanding of how a Cancer Care Road Map and resources could make a significant difference. Throughout her career from bedside nursing to high-profile executive positions, Julie measured her success one patient experience at a time.

When she was diagnosed with ovarian cancer, Julie experienced firsthand how easy it was to miscommunicate, even when everyone had the best intentions. Her four years of treatment increased her sense of urgency to make research-based communication and decision-making resources that would be useful to people like her widely available.

To make it happen, she generously established the Fill the Gap Fund at the IU Simon Comprehensive Cancer Center to support the Cancer Care Road Map Project.

Even though I'd been a nurse for more than 40 years, I often felt overwhelmed, frustrated, and at a loss due to poor communication. I know we can do better, and I trust [the Cancer Road Map Project will] get us there.

Julie Martin, RN, MSN, and Founder, Fill the Gap Fund (1957-2022)

Why do we need a road map and resources during cancer care?

The short answer: Miscommunication. It happens often because it’s a challenge to communicate well. When clinicians, patients, and their loved ones aren't connecting, there may be:

  • Unnecessary delays in tests or treatments
  • Increased patient symptoms and psychological distress
  • Treatment may be inconsistent with the patient’s values and goals
  • Confusion about the treatment between clinicians or sites of care
  • Uncertainty among caregivers about how they can best help

What does the research show?

Multiple studies by the Cancer Care Road Map team and scientists worldwide demonstrate many gaps in communication. Specifically, these research studies reveal: 

  • People with cancer, their families, and clinicians often delay or avoid critical conversations about prognosis, goals of care, values, and preferences.
  • When people with cancer, families, and clinicians avoid or delay critical conversations, patients receive overly aggressive, often futile, treatments and experience higher levels of physical and emotional distress.

We also know there are significant barriers to communicating well: 

  • Information related to cancer is complex and, therefore, difficult for clinicians to communicate well and for people with cancer and families to comprehend.
  • Cancer is psychologically distressing, and the distress is often unrecognized or not addressed. This distress compromises comprehension, decision-making, and coping.
  • People with cancer and families often have unrealistic expectations about what cancer treatment will accomplish. 

It’s clear there is a critical need for scalable interventions that overcome known barriers to effective communication and decision making.

Patient values and goals often frame the experience of illness and influence treatment choices. It’s important for clinicians to know what is important to patients in addition to biomedical issues.

Ann Cottingham, MA, MAR — health communications researcher

Putting the insights and science to work

Maps and resources to keep track of where you are, how you got there, and where you may go next

The Cancer Care Road Map Project team is currently developing and testing multiple innovative digital maps and resources with interactive graphical interfaces. The goals are to transform patient-oncologist communication and eliminate miscommunication.

The maps and resources connect clinicians, patients, and their loved ones and fill the gaps that disrupt effective communication.

The maps are interactive, graphical interfaces that represent what is likely to happen in the future based on what is happening today. The possible futures are depicted as a branching series of decision points, care paths, and outcome assessments based upon disease-management guidelines.

Like all maps, these interactive representations provide information about where we are, where we want to go, and the various routes. A cancer care map allows all parties opportunities to anticipate, discuss, and prepare for both the desired and undesired outcomes and changes treatment or care plans.

The best choices are consistent with the best evidence and the patient’s values and goals. Patients, caregivers, and oncologists, however, understandably struggle to discuss treatment options, benefits, harms while also keeping track of important personal goals. 

The Cancer Care Road Map team is actively developing resources to help patients prepare for conversations with their care team, to identify, evaluate, and then communicate their goals, and create with their care team a decision-making process consistent with their preferences.

The average person with cancer spends very little time with their cancer care team. Mostly they’re on their own, trying to recall what was said or decided, thinking about what does and doesn’t make sense, anticipating their next appointments, or living with the consequences.

In the future, Road Map maps and resources will be available prior to, during, and after the times with their cancer care team. Recordings of the time spent and what was discussed and why will be available as well. The accessibility of Road Map solutions provides the patient and caregiver unlimited access to accurate, relevant, and understandable information.

People with cancer, caregivers, and oncologists are overwhelmed with complex and difficult-to-communicate information. But we’re lost without understandable information. Our team is developing resources to manage information so the person with cancer can access critical information and critical moments.

Connect with the Cancer Care Road Map team

Learn more about the Road Map for people with cancer, caregivers, clinicians, and researchers.

Mailing address:

Indiana Cancer Pavilion, Suite 473
535 Barnhill Drive, RT 473
Indianapolis, IN 46202-5289

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