- Partnered with Montefiore Medical Center to evaluate the “What Matters to Me” tool, conducting interviews with 15 Spanish- and English-speaking patients and a survey of 29 oncologists at 3 Montefiore cancer clinics in the Bronx. Qualitative findings suggested that:
- Patients found the tool helpful in prompting them to bring up topics they would otherwise forget about or be reluctant to discuss with their clinicians.
- Clinicians thought the tool could be useful in enhancing patient-provider communication.
- Engaged 61 patients in head and neck, gynecologic, and urologic oncology clinics to field test the tool. Among these patients:
- 90% reported that the tool was easy to fill out.
- 62% reported that the tool helped them think about ways cancer treatment could affect their lives.
- More than 50% rated each of the quality-of-life considerations as somewhat or very important.
- Gained deeper understanding of quality-of-life considerations for patients, finding that the patients were most concerned about nutrition, managing physical symptoms, and living independently.
- Expanded eligibility for using the tool to include patients at any stage of their treatment, rather than only those newly diagnosed, finding that patients further in their treatment were more receptive to sharing their priorities and concerns.
- Adapted its outreach approach to from phone calls prior to appointments to in-person support for patients during appointments, increasing patient touchpoints and reducing clinician resistance. Found that clinician mention of the tool during appointments was the most effective way to encourage patients to participate.
- Produced and publicized a white paper highlighting study findings, as well as the “What Matters to Me” tool, via CancerCare’s newsletters, webinars, and patient/caregiver support groups.
- Disseminated the white paper and tool among clinicians at cancer centers across New York State, including Montefiore Einstein Cancer Center, Memorial Sloan Kettering Cancer Center, and Roswell Park Comprehensive Cancer Center.
- Prepared publications and presentations for national societies of oncology professionals.
- Engaged in discussions with the National Cancer Institute Community Oncology Research Program to consider replication among 46 national sites.
Field testing the tool with patients from marginalized communities offered important lessons for NYHealth’s approach to equitably engaging patients as partners. Montefiore Medical Center is a safety net hospital in the Bronx, where 86% of patients testing the tool were Black or Latino, 68% had an income of less than $50,000, half of patients were born outside of the United States, and one-third spoke Spanish as their first language. The research revealed that, while patients overwhelmingly regarded the tool as useful, patients who spoke languages other than English or had lower educational attainment struggled to use the tool in conversations with their clinicians. Therefore, an equity-focused approach to shared decision-making would require more linguistically and culturally accessible tools and intensive supports for patients.
While this project succeeded in confirming the usefulness of the tool, challenges still exist to integrate the tool in practice. For instance, only 20% of patients reported that their clinician discussed their worksheet answers with them, and 48% of clinicians were concerned it would be difficult to integrate the tool into their clinical workflows. CancerCare and Montefiore have identified that the next step of this work would be to research how use of the tool influences workflows, care provision, and patient outcomes.
Co-Funding and Additional Funds Leveraged: N/A
