Tag Archives: Patient and Public Involvement

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.

Incorporating lay members into our Executive Management Board

3 May

Patient safety isn’t just about medicine, medication, medical procedures or treatments – it is about people; both those who deliver care and those who receive it or work in partnership together.   The PSTRC focuses on working with members of the public, patients, carers and stakeholders (health professionals, pharmacists, local and national policymakers etc), with an Involvement and Engagement strategy to ensure that our research is “carried out ‘with’ or ‘by’ members of the public, patients or stakeholders rather than ‘to’, ‘about’ or ‘for’ them”. The PSTRC is committed to actively consulting, listening to and involving patients, carers, publics and stakeholders at all stages of research to deliver and embed involvement and engagement through partnership. This is integral to all our projects.

However, the patient/carer/public voice is important also in terms of governance – is the PSTRC doing what it said it would do well and to budget; as well as whether it is involving and engaging the appropriate people in its research etc.  The PSTRC has recruited one of two non-executive lay members (Angela Ruddock) as a full member of its Executive Management Board, which is chaired by Chris Brookes (Medical Director at Salford Royal NHS Foundation Trust) and whose membership includes David Dalton (CEO Salford Royal NHS Foundation Trust and Northern Care Alliance NHS Group).

The Executive Management Board oversees the Greater Manchester PSTRC and holds the PSTRC’s Leadership to account for the management and performance of the Centre. The non-executive lay members will broaden the accountability of the Centre by providing a challenging influence at Executive Board level and assurance on features such as budget, timeline and milestones, adherence to the Centre’s primary brief and purpose and its actual achievements can thus be measured in a more rounded way.

How do I get more involved in my patient safety?

1 Feb

Patient Safety Guide_combined images with arrow

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.

NAPCRG 45th annual meeting

1 Feb

NAPCRG17BannerScreen

Sally Giles, Penny Lewis, Sarah Rodgers and Patient and Public Involvement (PPI) representative Antony Chuter presented a workshop at the recent Annual Meeting of the North American Primary Care Research Group (NAPCRG) in Montreal. The objectives of the workshop were to provide an overview of examples of current research into medication safety in primary care, discuss the challenges to medication safety and some of the tools that can be used in practice to improve medication safety.

Sarah highlighted the work of the ‘PINCER’ prescribing intervention and workshop participants worked through clinical scenarios using the PINCER indicators. Antony discussed his role as a PPI member in various medication safety research projects. This stimulated discussion around patient involvement in healthcare research, as this is a relatively new concept in North America.

Penny and Sally discussed patient involvement in medication safety and the development of the Manchester Patient Safety Framework (MaPSaF) with workshop participants engaging in discussions about how they currently involve patients in the prevention of safety incidents. The workshop was well attended by a mixture of primary care physicians, pharmacists and healthcare researchers and the topic fitted well with the patient-centred care theme of the conference.

Sally also presented her work on the primary care patient measure of safety (PC_PMOS) in a well-attended oral session. Sally’s work stimulated interest in the audience with US researchers hoping to carry out similar work in this area.

Where next for the James Lind Alliance? After 50 James Lind Alliance partnerships, what does the future hold?

1 Feb

James Lind Alliance logo-transparent-background

Last year, the PSTRC asked members of the public, patients, carers and healthcare professionals ‘What are your questions about primary care patient safety?’ This process was called a James Lind Alliance (JLA) Priority Setting Partnership (PSP). The aim of the JLA is to work with patients, carers and healthcare professionals to identify the questions they believe are a  priority for research to address. For our PSP the top 10 priorities included questions focused on the most vulnerable in society, holistic whole-person care, safer communication and co-ordination between care providers, work intensity, continuity of care, suicide risk, complex care at home, and confidentiality. This was the first national prioritisation of future research for primary care patient safety and helped shaped our new PSTRC focus.

There have now been over 50 JLA partnerships which have asked people to identify future research questions about a range of different healthcare areas from schizophrenia to endometrial cancer. In November 2017, the JLA hosted a meeting to reflect on the partnerships, identify key issues and to share learning. People shared their experiences to help shape the future of the JLA process and to reflect back on the process to identify the parts that worked well and where there might be room for improvement. Key to all the partnerships is that they have all prominently championed the voices of patients, carers and healthcare professionals to help prioritise research questions that are of importance. The JLA is overseen by the NIHR to support the research priorities identified through the partnerships so that they can feed directly into national funding priorities.