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PRIME Description

Client: Daniel Richardson (UNC Lineberger Cancer Center)
daniel_richardson@med.unc.edu

Background: I am an oncologist who sees patients with leukemia, an aggressive blood cancer. I lead a research group involving PhD students, medical fellows, and medical students. Our research group has developed a prototype electronic patient-facing values clarification tool for older adults with leukemia called “PRIME” (Preference Reporting to Improve Management and Experience) using Adobe XD. We used a participatory co-design process involving patients, caregivers, and clinicians to develop PRIME. Our formational studies demonstrate that patients and clinicians find PRIME acceptable, and that it may be effective at improving treatment decisions. PRIME uses best-worst scaling (BWS), a simple yet robust values clarification method, to capture patient values. We engaged over 800 patients, caregivers, and oncologists to create and refine a blood cancer specific BWS measure that is used in PRIME. Our goal is that PRIME would generate a personalized values dashboard in real-time to inform shared decision-making between oncologists and patients about chemotherapy.

Unfortunately, survival is tragically short for most patients with leukemia. It is critical that decisions about chemotherapy are aligned to patient preferences. Choosing the “best” treatment option often depends on what each patient values most: quality of life or living longer. Patients with leukemia differ substantially in their preference for prioritizing these outcomes. Therefore, accurately clarifying patient values is essential to inform treatment decisions and limit unnecessary suffering. This currently is done very poorly as patients and oncologists often do not have the tools to adequately discuss patient preferences and incorporate them into treatment decisions. Currently, no tools have been developed to assist in this process.

The objective of this proposal is to build upon our current prototype to develop a mHealth application that is able to deliver the BWS measure (and other surveys) to patients and to produce real-time visualizations of their results. We plan to use this tool as part of a randomized clinical trial to improve treatment decision-making among older patients with leukemia. This tool needs to have the following functionality:

  1. Deliver the BWS measure (similar to a survey) to patients electronically along with other patient-reported outcome measures (electronic consent would be ideal)
  2. Analyze the results of the BWS measure in real-time.
  3. Generate a personalized visualization of the results of the BWS (see examples in attached PDFs) for patients including longitudinal results if they have taken the BWS measure more than once.
  4. Send results of the BWS survey to the treating oncologist.
  5. Be HIPPA compliant / secure

Other non-essential functionality would include: – Incorporate educational videos for patients to orient them to the tool and the study

  • Interact with existing electronic health record systems (EPIC, UNC MyChart)
  • Securely store all data for all participants
  • Incorporate the functionality/usability of our current prototype

We envision either a web-based platform or an app, either would be appropriate.