Hospice providers have leveraged data in various ways to both identify and address the biggest barriers to access and unmet needs among underserved terminally ill patient populations. Some avenues may be more fruitful than others.

Hospices need careful consideration when implementing more equitable patient data collection methodologies that lead to impactful change, according to Brittany Chambers, director of health equity and special initiatives at the Center to Advance Palliative Care (CAPC).

Hospice providers need both a feedback avenue and data analysis process that allows insight into how their programs are meeting community goals and needs, Chambers said at the Annual Assembly of Hospice & Palliative Care, an event by the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA).

“It’s important that patients can share both their lived experiences and provide feedback about their clinical encounters,” Chambers said during the assembly. “It’s important for the team to continue to reassess and see where more changes can continuously be made to close gaps and advance equity for patients.”

Varied data pathways

Hospices have employed varied data-specific interventions, equity analysis projects and diverse programmatic infrastructures to better understand the root causes of health disparities across their service regions.

CAPC surveyed 150,000 health care professionals between December 2021 and January 2022 to gauge the efficacy and scope of their quality improvement efforts to advance equity among Black patients with serious illnesses. Nearly 150 health equity data interventions were identified in the CAPC survey, with 15 projects specifically focused on data collection and implementation activities.

One health care organization used patient data to adjust its clinical workflow process. The organization implemented a systematic change that reallocated staff resources and expanded access to its outpatient palliative care clinic.

In another health equity initiative, clinical teams examined data on patient enrollment rates by location, race and ethnicity to identify potential groups with significant access issues. The team identified Latino and Black populations with lower enrollment rates and held focus groups within these communities to gain deeper insight. As a result, the organization blended qualitative and quantitative data to develop a strategic enrollment plan that addressed social determinants of health barriers among vulnerable patients.

Holding focus groups among underserved populations yields important qualitative data that can drive deeper community engagement and help providers gain valuable insights, Chambers stated. Community conversations can allow hospices to better understand the social determinants of health and other social risk factors that they should be integrating into their program designs, she said.

Keys to improvement

Designing effective quality improvement and access initiatives involves seeking the perspectives of patients and caregivers to ensure services align with their preferences, according to Karen Bullock, a member of CAPC’s Advisory Council. Bullock is also professor at Boston College’s School of Social Work and Global Public Health.

Collaborating with other providers can help cast a wider net of data collection across underserved communities, Bullock indicated. Pooling data can help drive innovative change towards improved access and quality, she stated.

“Many in our field are making ongoing, concerted efforts to deliver more equitable health care and address disparities,” Bullock said at the assembly. “We can all work together to grow the evidence base of health equity actions for our field guided by the needs and priorities of our patients.”

Having a community-based participatory research (CBPR) methodology in place could aid hospices’ data equity efforts, according to Dr. Elizabeth (Liz) Chuang, director of Montefiore Health System’s Einstein Center for Bioethics. Chuang is also a researcher who focuses on community-based end-of-life care and equity topics. CBPR practices allow hospices to ask deeper questions beyond patient and family health care experiences, such as their values, beliefs and daily challenges. 

CBPR data collection practices can help move the needle forward in greater disparity awareness, but the methodology involves careful ethical consideration, according to Chuang. Providers may inadvertently introduce biases when choosing community member participants, potentially excluding important perspectives and skewing results in the process. 

Having diverse representation is a significant aspect of effective community-engaged research methods. Inclusivity is an important part of community-based research that bears insightful data around patient and caregiver needs, Chuang indicated.

“You will never be able to absolutely reflect all of the diversity of the community that you’re serving,” Chuang said during the assembly. “Perfect is not probably an attainable goal. However, you can strive for it as much as you can. It’s so important to be working with your community and not just in your siloed research world.”

Developing trust, shared decision-making opportunities are vital parts of health equity improvement, according to Melissa Mazor, nurse scientist and assistant professor at Mount Sinai’s Icahn School of Medicine. These are the key principles that can lead to sustainable and growing community partnerships, Mazor stated.

Hospices need a process for understanding their data metrics and research outcomes, she added.

“From this core center of meaningful and strengthened partnerships, we have expanded knowledge, improved health and health care programs and policies in thriving communities,” Mazor said. “Some of the principles … are ensuring shared vision and values in a community advisory board, ensuring mutuality and respect among all our members, transparency and communication. This is an ongoing process.”