Challenging health inequalities by involving seldom-heard cancer patients in research and service design
The Brief
The Cancer Patient Experience Survey shows that people from minority ethnic backgrounds, LGBT people and older people (aged 65 and over) have poorer experiences and outcomes in cancer services. It identifies delays in diagnoses and access to treatment, less information, poorer communications, greater pain, fewer referrals to support groups, among other issues.
Macmillan wanted to engage people living with cancer from ‘seldom-heard’ groups to:
- Get insights into experiences and what might account for these inequalities
- Identify any unmet needs of people living with cancer from across the UK
- Test online communities as a means of engaging with people living with cancer
Find out why our work was Finalist for the MRS Healthcare Research and HSJ Service Redesign Awards.
The challenges they faced
- Recruiting and engaging LGBT, BAME and older people living with cancer from across the UK
- Creating a safe, trusted space in which people living with cancer can talk openly about their experiences to identify unmet needs
- Supporting a client new to the benefits of agile online research
- Working with academics, healthcare professionals and diversity specialists, as well as 'experts by experience'
- Generating robust enough qualitative evidence to shape cancer policy
Download full version
Read the full story and learn how Macmillan engaged LGBT and BAME people living with cancer, who in turn helped them think beyond what they thought they knew