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New research themes in the PSTRC

1 Feb

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The PSTRC will build on its existing themes of Safety Informatics and Medication Safety, and their specific focus on digital and diagnostic interventions and polypharmacy. However, the 2017-2022 PSTRC differs from its predecessor in having two new themes:

  • Safer Care Systems and Transitions
  • Safety in Marginalised Groups.

Safer Care Systems and Transitions will build on the centre’s previous work on multimorbidity to look at transitions and pathways of care. Transitions can be from one part of the NHS to another (e.g. hospital to primary care), between NHS and private care providers, between the health and social care sectors, or between other sectors and sites including the voluntary sector, self-help groups or “home.”  Most research and advances in patient safety are typically found within single discrete care settings, such as the emergency department. Less attention has been paid to safety between (transitional) primary, social and community providers and hospital care settings.

The second new theme is Safety in Marginalised Groups. Marginalised Groups include people that are excluded from mainstream social, economic and cultural life. This includes those with mental illness or at risk of suicide or self-harm, people living in nursing homes, the homeless, people with sensory impairment or who speak English as a second language. Such groups are at greater risk of experiencing adverse patient safety outcomes.

In all research themes, service responsibility and patient responsibility for patient safety go hand-in-hand. They are equal – it is a shared responsibility that requires co-design and partnership working, which is why the PSTRC has an involvement and engagement approach supporting all its research.

Safety in Marginalised Groups: Why a new theme for the PSTRC?

1 Feb

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Much of the work that took place in the first NIHR Greater Manchester PSTRC focused on involving patients and carers in its work. Examples of this were the James Lind Alliance Priority Setting Partnership, and public engagement events such as The Nest and More Than Just a Number.

In the second incarnation of the Greater Manchester PSTRC, one of the four themes, and a new theme for the centre, is Safety in Marginalised Groups. This research theme will focus on improving patient safety for marginalised groups of people, who are at a higher risk of harm within the healthcare system. The increased risk can be caused by a number of factors, for example, we know that Black and Minority Ethnic (BME) groups have poorer health outcomes, as well as poorer access to, 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, or being homeless).

This theme has two main strands of research: the first on mental health and the second on patients and carers. Over the next five years, the Safety in Marginalised Groups theme researchers will work closely with researchers in other themes to explore a number of key issues, challenges and opportunities for improving safety in marginalised groups including:

  • communication
  • self-management: the co-design of tools to aid patients in their healthcare journeys
  • using mobile technology to monitor health.

A major component of the new theme will be mental health and it is particularly exciting that the PSTRC will be teaming up with the Centre for Mental Health and Safety. Some of the key safety outcomes in mental health involve suicide or self-harm. The proposed programme of work will look at the components of a ‘safe mental health service’ as well as investigating treatment gaps in the care of people who self-harm.

Find out more on our Safety in Marginalised Groups webpage.

What are Marginalised Groups?

1 Feb

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You may not be familiar with the term marginalised groups. So what do we mean by marginalised?

The Oxford English dictionary definition of marginalisation is: “To render or treat as marginal; to remove from the centre or mainstream; to force (an individual, minority group, etc.) to the periphery of a dominant social group; (gen.) to belittle, depreciate, discount, or dismiss.” Within the academic literature, similar definitions have been used. For example, some simply state that marginalised groups are ‘populations outside of “mainstream society”’ (Schiffer K, 2008).

The term is increasingly replacing and/or being associated with other similar terms which you may be more familiar with, such as ‘vulnerable groups’, ‘seldom heard groups’ or ‘hard-to-reach groups’. Although each is different, all these terms include two main aspects. Firstly, there is a main/dominant/central individual or group, (e.g. the government) exerting power over another individual/group, with some sort of disadvantage occurring. In other words, the process of marginalisation leads to unequal outcomes.

Marginalisation is a dynamic process and people can move in and out of such groups. Many people can fall into one or more categories or groups simultaneously, meaning that it is a complex area to research.

In patient safety terms, people belonging to such marginalised groups are likely to experience more and perhaps different patient safety issues in relation to the general population. The truth is we simply don’t know as this is an under-researched area. What we do know however is that there are many barriers to accessing care for those considered to belong to marginalised groups such as migrants, the homeless, and people living in poverty and include issues relating to the way the health and care systems function. We want to understand the range of issues and people we ought to consider in our forthcoming research. This is why we in the Marginalised Groups theme are conducting a review of the published academic literature, identifying and analysing the existing literature on marginalised groups and patient safety in the United Kingdom. This will allow the theme to prioritise its patient safety research agenda over the coming five years.

How do I get more involved in my patient safety?

1 Feb

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We have been working together with patients, carers, members of the public, GPs and pharmacists to design a PSTRC patient safety guide for patients and carers. This will be a useful resource to help answer key questions about primary care patient safety and to identify points where patients and carers can make their own care safer.

The guide consists of a short booklet, website and cue card prompts which people can use flexibly:

  • to plan for a consultation
  • as a memory aid
  • to help make the most of the time a person has with a healthcare professional
  • to support their own care at home.

As part of this project, the PSTRC has held co-design events which have brought together members of the public, patients, carers, GPs and pharmacists to discuss how everyone can work together to make care safer. Discussions have focused on key points in the care pathway and actions that each person could identify to improve their patient safety with the priorities that were identified for their own care. These discussions were then used to develop and refine the guide.

Since completing the initial development stage of the patient safety guide, work has been taking place with key national stakeholders to further refine the guide and the centre will continue to co-develop the project and the testing of it with patients, carers and healthcare professionals.

If you’re interested in hearing more about the guide, or to find out more about future co-design events, please contact Rebecca Morris at rebecca.morris@manchester.ac.uk.

Patient safety and children with long-term health conditions

4 Sep

by Sue Kirk, Professor of Family and Child Health

Juvenile diabetes patient with his mother

Increasing numbers of children and young people are living with a long-term health condition such as diabetes or asthma. Over the past 20 years we have also seen more children with complex healthcare needs being cared for in their own home rather than in hospital.  These changes have led to parents (and the children themselves) taking on roles and responsibilities that would have been unthinkable in the past. This includes monitoring their individual health, managing their own medication and treatment, using complex medical equipment such as ventilators, acting as care coordinators, and in some cases organising and managing home care teams.

Parents and young people don’t only manage these health conditions within the relatively controlled environment of the home. Children and young people go to school and college, take part in social activities with their peers and families, go on holiday and may spend time in hospices and other care settings. They may also receive services from a vast array of health, social care and voluntary sector organisations. This presents challenges for communication, both between professionals and between families and professionals, and consequently for care integration. This is worsened as young people transfer to adult services.

Surprisingly there has been little research that has examined patient safety for this marginalised group. We don’t know how families or health care professionals understand, monitor and manage safety in this complex situation or how safety could be promoted and improved.  This is what we intend to look at as part of the Safety in Marginalised Groups: Patients and Carers theme of the Greater Manchester PSTRC.

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.