Placing ALL patients and carers at the heart of patient safety research: introducing our new theme on marginalised groups

23 Aug

by Caroline Sanders, Research Lead in Safety in Marginalised Groups: Patients and Carers

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In his 2013 review for improving patient safety, Don Berwick emphasised the importance of seeking out the voice of patients and carers, and ensuring they are ‘present, powerful and involved’ at all levels. This has been a major focus of our earlier research, our involvement and engagement work, and led to our priority setting partnership in conjunction with the James Lind Alliance in March 2017. This identified the number 1 question for future research is to understand ‘How can patient safety be assured for the most vulnerable in society?’. This recognises the widespread concerns and evidence showing that patients and carers who are already disadvantaged and marginalised, may also be at greater risk of harm within the healthcare system.  Additionally, we have not yet done enough to ensure we hear the voices and understand the experiences of marginalised groups to be able to develop appropriate and effective interventions to support patient safety for ALL patients and carers.

Our starting point for the new research that will evolve along with our further Patient and Public Involvement (PPI) work, is to acknowledge that people may be disadvantaged and marginalised by multiple factors such age, disability, ethnicity, sexuality, gender, and socio-economic disadvantage.  For example, we know that BME groups have poorer health outcomes, and poorer access and experiences of healthcare services. People may also be marginalised because of stigma and poor access to services for specific conditions (e.g. mental health problems); or they may be marginalised because of the circumstances or settings in which they live (e.g. living alone, caring for someone at home, living in a rural setting, in a care home or prison, being homeless).

In this theme, we will be working closely with other themes and our PPI contributors to focus on and understand safety risks and concerns for specific population and patient groups. For example, what are the particular challenges in relation to communication, which we know is considered by patients and carers to be a crucial foundation for safe care? What are the challenges for marginalised groups of patients in the ever-changing care context, where there are new responsibilities and health care practices expected as a part of enabling better self-management? We will co-design or adapt tools to support patient safety that will be tailored for such groups.  This may include use of mobile apps or other technologies, and we will also focus on the help and support that people might need to make sure they can use these, or enable appropriate alternatives. We know this means we need to be creative in reaching out to communities and groups who currently feel disempowered or hidden in relation to healthcare research and service provision. We are looking forward to this exciting opportunity to seek out some of the quietest and most hidden voices to ensure the most vulnerable can have better and safer care.

Please see our webpage or contact us for further information or to share any comments and suggestions.

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