A new peer-reviewed, open access paper by Picker, published in the BMJ Open, provides an approach to understanding and tackling under-representation in patient experience research.
The TAURUS (Toolkit for Assessing Under Representation in User Surveys) helps researchers and health and care providers take steps to make sure diverse voices are represented and heard when gathering feedback.
Why does this matter?
Representation in patient feedback is vital for promoting equality, diversity, and inclusion. However, it is often the case that not everyone’s voice is heard when care services ask people about their experiences.
If the feedback collected does not include people from different groups (such as populations defined by protected characteristics or socially excluded communities) then we cannot understand their needs, preferences, and experiences. This can lead to missed opportunities to improve services for those who need it most.
The paper identifies and addresses the five main reasons why people can be missing from feedback:
• Non-access. Some people are unable to receive care at all, and their experiences as non-users can be overlooked.
• Non-invitation. Some patients are left out of surveys because of missing records or limited outreach.
• Non-response. Some people may not fill in surveys because of language barriers, mistrust, or accessibility issues.
• Non-identification. If surveys do not ask the right questions, differences between groups cannot be identified.
• Non-review. Even when data is collected, differences in experience may not be investigated.
Commenting on the importance of this paper, Chris Graham, lead author and Group CEO of Picker, said: “Patient experience research provides a user perspective on the quality of health and care services, and offers the insight to ensure that care is truly person centred. To make sure that care is equitable – that it is person centred for all people, always – it’s vital that patient experience measures take into account the views of a diverse range of users. But this can be challenging, and as a result too many voices are left unheard.
“We’re delighted to be sharing this new toolkit to aid researchers and health professionals in understanding and improving the representativeness of their work. By describing the different reasons why people’s voices may be missing we offer users the framework and language to identify, assess, and ultimately reduce underrepresentation. We encourage researchers and health service providers alike to adopt this free tool for use in reviewing their own collections.”
The full paper is available from the BMJ at https://bmjopen.bmj.com/content/15/2/e087627.full.
