This panel featured two patient advocacy groups that have taken the concept of clinical pathways and reimagined them by using patient supports, care preferences, cultural experiences, and community environments as starting points for pathway design. With one program in its early stages of data collection and the other just launched, these presentations provided a glimpse into how pathways can be adapted to address community-identified barriers to care.
First, we heard from breast cancer survivor Reverend Tammie Denyse, Co-Founder and President of Carrie’s TOUCH, a patient advocacy organization committed to giving voice to the unique experiences of African American women with breast cancer. Rev. Denyse presented a Carrie’s TOUCH initiative called Project SOAR, a national study in partnership with UCLA Departments of Psychology and Psychiatry/Biobehavioral Sciences and the Jonsson Comprehensive Cancer Center to understand African American women’s unique experiences with and views on the breast cancer experience. The ultimate aim is to analyze their findings in order to develop an Ethnocentric Patient-Centered Care Pathway.
In their community surveys and focus groups (which they refer to and promote to participants as “Gatherings”), Project SOAR investigators are uncovering cultural and societal barriers to African American women getting proper care, such as cancer screenings and check-ups. The struggle of the “Strong Black Woman” concept is that she is taught to embody strength and determination; she feels responsible for taking care of everyone around her. But she neglects to take care of herself and meet her own needs, such as health care needs. “It is important to understand culture when we are putting together interventions for African American women,” said Rev. Denyse. There is a great need for medical researchers to truly understand the social determinants of health surrounding this neglected group. These are the insights that led to Project SOAR and will result in the creation of Ethnocentric Patient-Centered Care Pathways—culturally aware, culturally competent, and culturally sensitive pathways that legitimize the patient’s voice. Rev. Denyse and the research team aim to produce culturally relevant methodologies to help Black women survive breast cancer and survive well.
Project SOAR’s national survey is live now for any readers who want to respond or share with others.
Following Rev. Denyse’s presentation was prostate cancer survivor Thomas A. Farrington, President and Founder of the Prostate Health Education Network, or PHEN. PHEN is a patient advocacy network that aims to eliminate the care disparities among African Americans with prostate cancer through national initiatives and support. Mr. Farrington detailed PHEN’s patient pathways tool, PHENPath, which was just launched on October 5th and equips patients to better communicate with their doctors during shared decision-making conversations about cancer treatment options.
Mr Farrington said that PHEN recognized patients’ lack of knowledge to participate in shared decision-making with their doctors as well as time-constraints preventing doctors from spending time to educate patients. Patients and their families need access to easy-to-use decision aids, he said, which can help guide discussions with their doctors. Importantly, these decision aids must incorporate newly approved and available treatments. This is what led to the creation of PHENPath; they want to help patients understand their diagnosis, treatment options, common cancer terminology, risk level, and what their treatment journey is likely to look like, based on their diagnosis and patient-specific factors. Patients can even bring the PHENPath with them to the doctor’s office on their mobile device and use it to discuss options and understand long-term impacts of choices.—Amanda Del Signore
This session was sponsored by Amgen.