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We have published a set of three short videos on our YouTube channel to help providers and commissioners understand how perceived bias, poor communication and dignity issues can leave black and minority ethnic cancer patients with poorer patient experience than white British people.
We know from the annual National Cancer Patient Experience Survey, the latest of which is currently underway, that while experience of care is generally very positive, there is a pattern of poorer experience being reported by people who describe themselves as Asian, Black, Mixed, Other White and Other in our survey questionnaire.
They report being less likely to have been involved in decisions about their care and less likely to have received an explanation of treatment that they understand.
It’s not a massive or dramatic difference, but it’s a consistent and concerning one that we have a responsibility to acknowledge and to try to address.
Every year, we run a campaign to encourage more people from BME backgrounds to share their experiences through our surveys and feedback tools, but that only has value if we use the insight we learn from their responses to drive improvement.
Realising that the data from the survey can reveal only so much, we wanted to understand more about the issues and identify some of the things – often small but impactful things – that could be done differently to avoid inadvertently disadvantaging any patients. So, last year we commissioned some qualitative research from a human rights charity – brap – to know more about what is driving the differences in survey results.
Qualitative research, including purposive sampling techniques, is a powerful approach for gaining an in-depth understanding the range of experiences of a population or group of people. Our work with brap included focus groups with a range of patients to identify good and poor practice, as well as in-depth interviews and a literature review to provide further detail and context.
From this research, our three short films were produced. They are an accessible way to share information with a wide range of stakeholders, and we hope they will be used as a training resource or a discussion starter. Video can be powerful in telling the stories of individuals whose very personal experiences can sometimes be lost sight of under layers of statistical data. It’s hard to look into the face of someone as they tell you how they were left hurt by a careless action or an inaccessible process and to not care about it and want to make sure it won’t happen to anyone else.
For example, a woman in the Bias film who tells us how something as simple as a warmer introduction and a handshake could have put her and her husband at greater ease during a cancer diagnosis. In the Communication film, patients and advocates urge healthcare professionals to be more aware of the greater risk of prostate cancer among black men and initiate conversations that could lead to earlier diagnosis. Then there are the patients in the Dignity film who felt their needs were simply not catered for when they were not offered wigs or compression bandages to suit their hair and skin colouring.
Some of the issues identified require longer-term systemic solutions. This qualitative research, where we really listened to individuals telling their story, could be a starting point for that change. At the other end of the scale, there are “quick wins” to be had across NHS services in addressing solutions that are in the gift of so many commitment members of our workforce.
If these films help achieve just some of the potential improvements identified, they will have given a substantial return on investment for us and for the patients who gave their time and put their trust in us to listen to their feedback. Cancer doesn’t care about people as individuals. We must.