Cost Transparency in Cancer Care

American healthcare costs are notoriously opaque and on the rise. Patients are typically unaware of costs until they receive a bill much later. This can be especially overwhelming when receiving oncology treatment. We reimagined how patients can better understand costs along their cancer journey.
My role
Researcher and human-centered design expert
company
Kaiser Permanente Washington
funding
Robert Wood Johnson Foundation
team
Nora Henrikson, PhD, MPH Andrea Hartzler, PhD
Leah Tuzzio, MPH
Callie Walsh‐Bailey, MPH
Aaron Scrol, MA
Process

01 – clinic research

  • Contextual inquiry with health system staff

02 – patient research

  • Contextual inquiry with 20 patients in their homes

03 – analysis

  • Identify barriers and facilitators
  • Define 3 use cases

04 – design

  • "Prototype" ideas with patients using storyboards
  • Service blueprint
Mapping pain points

We visited oncology patients in their homes and asked them to show us how they manage information about cancer care costs. Surprisingly, much of this was done on paper and in many cases a spouse or other family member helped track expenses. One patient showed us her hand-written log of each amount she paid until she reached her out-of-pocket maximum, since after that point expenses would be covered by insurance.

We mapped out the current process with touchpoints when patients currently inquire about cost information and found that pain points were primarily associated with barriers to information—when a patient or a team member simply could not access cost data.
Key barrier
Cost data was held in a virtual vault, intentionally inaccessible, with prices constantly in flux, and managed by administrators.
The focus of this project was not to address this major barrier, as this could only be addressed by an organizational change or by a change in policy.* Instead, our focus was to demonstrate a more patient-centered vision for cost transparency at key points in the cancer journey, a team member or patient could find cost information when they seek it.
*Note: This project was completed in 2019, and in 2022, a federal law was was passed that would require insurers to post prices. However, without standards for how to make this data available, insurance companies released it in a way that is not usable by the average healthcare consumer.
Defining core use cases

I facilitated team workshops to synthesize insights from our observations and interviews. Together we determined there were 3 use cases where cost transparency would have the greatest impact. We then identified the information needed for each use case and how to make it available to both team members and patients.

Service design prototyping

I drew storyboards to use as narrative prompts to "prototype" the service experience, so that we could learn from patients their preferences for discussing costs with clinical team members. We walked through the storyboards and asked interview questions.

clinical decision-making
The clinician can offer alternative treatments or modify the treatment timing or mode of administration if cost is a concern. The patient can factor cost into their decisions.
planning + budgeting
The patient has already decided on the course of treatment but wishes to plan ahead for out-of-pocket expenses over time.
acute financial need
The patient is in financial distress, and before treatment can proceed, needs to connect to financial or community assistance.
Cost estimate tools
In addition to the storyboards, we had patients review proof of concept designs to understand the acceptability of printed cost estimates and an online cost estimator tool.
We learned that at the start of the journey, it was useful to see the total cost of the treatment plan to determine how much they would pay out of pocket before hitting their max. During treatment, visualizing the progress toward the patient's out of pocket maximum would be helpful for the patient or a family caregiver to see.
Service blueprint
The blueprints outlined a team-based approach to cost transparency in addition to data sharing necessary to make information available at the right time.

Moments

Patients want cost information earlier in their cancer journey, before they start their treatments.
Patients want the clinical team to more proactively invite cost questions.
The physician can discuss cost but should have a limited role. Otherwise, patients may feel they aren't getting the best treatment.
Privacy matters. Patients did not want to cost conversations overheard in the clinic
Publication
Guidelines for improving cost transparency were published in 2019 to the Annals of Internal Medicine.