Macmillan Cancer Support
Reducing inequalities in the provision of cancer care
The problem
Successive waves of the National Cancer Patient Experience Surveys showed that people from ethnic minority backgrounds, LGBT people and people aged 65 and over all had worse experiences in cancer services. They were also less likely to survive cancer as long. These survey results identified key inequalities, and described where they were more likely to occur, but they fell short of providing insights into the root causes and lived experiences behind the statistics, or to suggest ways to address these disparities.
We approached Macmillan Cancer Support to find out why they thought such inequalities existed, and whether we could help them understand the lived experiences and unmet needs of these patients.
Our approach
After spending 2 months in a bespoke online research community with 90 ‘experts by experience’ (i.e. diverse people living with cancer) and 24 ‘experts by profession’ (i.e. healthcare professionals, diversity experts and academics), exploring in depth experiences at all stages of the cancer journey, we identified a range of factors accounting for inequalities.
Insight
The causes of inequalities varied by patient group, by cancer type and across the cancer journey. High pressures on services in areas of high deprivation, lack of targeted public health education and screening programs, for instance, led to delays in diagnosis, with negative impacts on experiences and outcomes. Data gaps obscured needs. Prejudices and misplaced assumptions about patients among healthcare practitioners made many feel that they were not treated as ‘whole persons’, with care and respect. Community-based barriers, such as taboos, fears and distrust, contributed to the challenge of reducing inequalities.
Impact
An independent evaluation found that our approach was a powerful and cost-effective way to get rich insight into lived experiences and to identify unmet needs. It engaged experts and patients in peer learning and support. This brought unintended therapeutic benefits. It also meant that the community functioned as a form of training for practitioners, not just insight.
Accolades
HSJ Innovation in Community, Primary, Secondary and Acute Care Serve Redesign - Finalist - 2016
MRS Healthcare Research - Finalist - 2016
