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How was it for you? Reflections on involvement

2 Aug

This edition’s reflection comes from Kay Gallacher, a member of the public who is involved in the NIHR Greater Manchester PSTRC Patient Safety Guide.

Kay Gallacher PSG_lightened_cropped

Why did you become involved in the Patient Safety Guide project?

I have long been aware of the issues that elderly family and neighbours, in particular have experienced trying to manage contact with their GPs and pharmacies.  The brilliant, simple idea behind this Patient Safety Guide seems to address many of the concerns in a practical and tangible way.  I was also attracted by the fact that this was a collaborative project where patients, carers and medical professionals all have an equally important input into the design and delivery of both the paper- based Guide and the mobile app, hopefully making it a 360 degrees (all round) useful tool.

How do you think the Greater Manchester PSTRC benefitted from your involvement – what difference do you feel that you made?

I guess it’s for others to judge what impact, if any, I’ve had on the project.  However, I’ve brought a genuine understanding of the problems patients face when coming into contact with primary care and producing leaflets and guides was bread and butter for me in my marketing career.  So, I hope I’ve been helpful in producing and delivering an effective product.

How do you feel that you benefitted from your involvement?

I am involved with several projects, but this one in particular has sharpened my understanding of how the GP/ patient dynamic operates.  I came to this project with a patient’s viewpoint but I now have a better insight into the challenges GPs face in establishing and maintaining effective communication with patients.  Also, the deep personal satisfaction of feeling that I’ve made a positive contribution.  Importantly, I can’t overstate the pleasure I’ve derived from being part of a cohesive, effective and well-led team composed of great people from a wide range of backgrounds.

Would you recommend becoming involved in research to other patients and carers? If so, why?

Definitely!!  What you get from being involved largely depends on what you put into it but I can absolutely guarantee that, regardless of your starting point, you will have a better understanding of the workings of medical research and the wider world of medicine in general.

PhD fellow focus: Anna-Sophia Wawera

2 Aug

Anna Sophia Wawera picture_cropped and smaller

by Anna-Sophia Wawera

Anna-Sophia Wawera joined the PSTRC Marginalised Groups theme as a PhD Fellow in April 2018. Before coming to the University of Manchester, she completed a Master of Science in Public Health at Sheffield Hallam University. Throughout her Masters, she was involved in several research projects examining student experience and health-related issues within the university. In addition, she worked for a medical device company in Berlin, Germany, which developed a therapy for patients with long-term conditions causing visual impairments. Based on her previous experience, her main research interests lay in the field of public health promotion among vulnerable population groups, with particular focus on young people and chronic condition management.

Anna’s PhD will focus on supporting and promoting safety in the context of childhood long-term conditions, with Susan Kirk and Caroline Sanders as her lead supervisors. With the rising prevalence of long-term conditions among children and the increasing focus on self-management, a growing number of children are being cared for at home instead of within the hospital setting. While this trend provides many benefits for children, as it enables them to grow up within their family environment, it also poses considerable challenges for primary caregivers, mainly the parents, as they are faced with additional responsibilities related to the care and management of their child’s chronic condition.

To date, this trend towards home-care and the increasing transfer of responsibilities from care professionals to families has been inadequately examined in relation to patient safety and the potential risks it may pose to young people with long-term conditions. This research will therefore examine how children/young people, parents and healthcare professionals perceive, monitor and manage safety within the home setting.  The final  aim is to co-design safety tools in close cooperation with key stakeholders to further support the promotion and improvement of patient safety among this vulnerable population group.

Exploring self-management and culturally appropriate patient feedback among British Bangladeshis in Manchester

2 Aug
British Bangladeshis article_visual minutes

Visual minutes from the workshop capture the main discussion points

by Papreen Nahar and Caroline Sanders

Previous Patient and Public Involvement (PPI) workshops within the DEPEND project have indicated a need to consider Black and Minority Ethnic (BME) groups. On September 21st, 2017,  two public engagement workshops were conducted in Manchester with a BME population – namely British Bangladeshis – to discuss their views and experiences of ‘self-management’ for long-term conditions, as well as the capturing and use of patient feedback and the potential of digital interventions. British Bangladeshis are a significant immigrant population, comprising 13% of foreign-born residents in England. In Manchester, Bangladeshis ranked second among South Asians for persistent inequalities reported, particularly Bangladeshi women. To maintain culturally appropriate language and gender segregation, the workshops were conducted in Bengali, and separately with men and women. Two professional artists were invited to prepare visual reports on the sessions. 

The Bangladesh High Commission, Greater Manchester Bangladeshi Association (GMBA), and Krishnochura (a British Bangladeshi cultural group) were the partners for these workshops. UK-based Bengali TV channels also highlighted the workshops, as these events were the first of their kind.

Following are the highlights from the workshops:

On Self-Management

  • Neither men nor women were generally aware of the concept of ‘self-management’, and they did not consider themselves as practicing self-management for chronic conditions.
  • Culture-specific lifestyles, food habits, notions about health & wellbeing, and specific gender roles for women were considered the other barriers for self- management.

On Patient Feedback

  • Most of the men and women have never been asked to provide feedback by the authority.
  • The general fear is that the negative feedback may affect their future treatment at GP centres.
  • They felt unstructured questionnaires and a bi-lingual feedback system would be useful.

On Digitalisation

  • Remote monitoring using digital tools (e.g. mobile apps) was viewed as a potential way of increasing awareness of self-management as well as providing feedback.
  • Digital illiteracy and language barriers were perceived to be obstacles to the use of digital tools in healthcare. However, the joint family structure (which is a common practice among this community) was considered an enabling factor in this regard, as the digitally literate younger generation could help the digitally illiterate older generation.

It was recommended that further research needs to be conducted to develop culturally sensitive co-designed digital tools to improve feedback and self-management.

Working together to help patients and carers to be more involved in safety

3 May

Patient Safety guide logo_cropped

The patient safety guide has been co-developed with patients, carers, general practitioners and pharmacists. We have worked together from the initial idea, to decide the focus of the guide, the first draft all the way through to refining it.

One key discussion we had early was a preference to develop a digital app based version to compliment the paper version which we are now doing. In March we held two more co-design events. In the first event we discussed what the app should include and key features that people like in an app, what they don’t like and what the guide app should include.

At the second event we discussed testing and piloting the guide package in practice for patients and carers and how would it be used with GPs, pharmacists and other healthcare staff. These discussions will be used to shape the next phase of the guide project to develop an app and test the full guide package.

Thanks to everyone who came along and got involved! If you’d like to find out more about the patient safety guide project or future opportunities to get involved please contact Dr Rebecca Morris.

New research themes in the PSTRC

1 Feb

All-theme banner

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

Marginalised

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.