Data Collection to Increase Palliative Care Clinic Visits by Black and Latino Patients

Data collection is a powerful tool in helping programs gain a better understanding of whether they are reaching patient populations equitably. When the UCSF outpatient palliative care team began reviewing its data with a more intentional equity lens, it discovered that Black and Latino patients were less likely to make initial and follow-up appointments compared to White patients. To address this, the team hosted listening sessions with Black and Latino patients to better understand the ‘why’ behind the disparities within their community. The team then planned to use both the programmatic and qualitative data to create quality improvement projects for the overall program.

Older adults, Black and Latino patients, people who were not partnered, and those with Medicaid coverage were less likely to attend an initial appointment.

After entering care, older adults, men, people who preferred a language other than English, and those living with serious illnesses other than cancer were less likely to return for follow-up visits.

Examining program data with an equity lens inspired the UCSF team to collect additional information that will inform QI efforts. Proposed measures to evaluate impact include the percent of referrals and follow-up visits broken out by racial and linguistic backgrounds. The team will also continue to collect qualitative data on patient satisfaction.

The UCSF palliative care team collaborated with the organization’s IT team to create a dashboard to track and monitor this essential data over time. The data review component of this initiative should be relatively feasible to implement.

Palliative care programs should regularly examine their data to understand the population they are serving, and programs that have IT support may be able to create a similar dashboard. Other valuable internal partners in this work may include researchers, statisticians, and health equity experts.

The data collection component should be relatively easy to scale. Conducting focus groups with selected participants will require additional resources; however, this work can help ensure that quality improvement efforts to address disparities are aligned with the needs and preferences of the target population.

Dedicated staff time for data collection and review is critical to the sustainability of this initiative. Additional funding and staff time will likely be required to conduct listening sessions, and staff may need informational interviewing training to do this work.

• Use data to analyze the current state of the program's patient reach
• Implementation always takes longer than expected
• Build in additional time
• Be a good collaborator. Regularly engage your colleagues who have a stake in the work and ask for honest feedback

Sarah Nouri, MD, MPH
Assistant Professor, Palliative Medicine, University of California, San Francisco

Kara Bischoff, MD
Medical Director, Outpatient Palliative Care Service, University of California, San Francisco