Shared Decision Making for People Living with Cancer as a Chronic Disease

We're creating better, patient-centered resources to promote shared decision-making.

Co-Creating Research Partnerships

In the last two years, PAF has worked with three partners: VCU Massey Comprehensive Cancer Center, Virginia; the Fannie Lou Hamer Cancer Foundation in Ruleville, Mississippi; and the Los Angeles Alliance for Community Health and Aging in South Central Los Angeles, to understand how patients living with cancer as a chronic disease make shared decisions about their treatment.

Year 1

In Year I, we co-created workshops with our partners to understand what matters to patients and caregivers and what barriers they face when accessing cancer care. We used discussion groups, narrative medicine sessions and surveys to hear the voices of our patients.

Year 2

In Year II, we returned to the same partners and asked them to put together smaller working groups, largely drawn from the Year I participants.

Year 3

This time, we focused on understanding what kinds of information our participants value and how and when they want to receive that information.

Results

The participants identified common themes across all three groups. They stressed the importance of having a relationship with their doctors and health are team. Mutual trust, good communication and a provider who know something about you as a person are critical to making shared decisions. Patients and caregivers in all three locations also talked about the hard issues they face: How do you talk about changing treatments that are not working or ending treatment entirely? What is the impact of real or perceived judgements or biases about race, sexuality and personal qualities on the patient/doctor relationship?

Patients also expressed their fears of getting substandard care if they had certain types of insurance, were uninsured or were unable to pay for their therapies. In all three locations, patients and caregivers raised issues about how to talk to their families about treatment decisions, especially when those decisions related to changing or ending treatment. Participants also expressed strong interest in becoming better self-advocates and in “paying it forward,” using their experiences to help other people facing cancer.