Tag Archives: Patient and Public Involvement

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

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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.

How was it for you? Reflections on involvement

1 Feb

This is the first in a new series which speaks to patients, carers and members of the public who have been involved in the work of the Greater Manchester PSTRC.

Susan Carter was involved in the Multimorbidity Research Advisory Group, which was set up in the 2012-17 Greater Manchester PSTRC to look at the problems faced by patients living with multimorbidity and carers helping to look after people with multimorbidity. You can watch the videos from the group’s first two meetings here.

Why did you become involved?

I was a carer for my husband until his death in 2009. He had multimorbidity problems which I felt were not understood by some medical professionals.

How did the PSTRC benefit from your involvement – what difference do you feel that you made?

I felt I was listened to and the other members of the group understood my concerns. Bringing this to the forefront may avoid other carers suffering like I did.

How did you benefit from your involvement?

I felt I had achieved something and hope that professionals take on board what was said and, in time, will involve carers more in research.

Do you feel that your opportunities for involvement could have been improved in any ways? If so, in what ways?

Not really. It was my first involvement and I enjoyed the opportunity.

Would you recommend becoming involved in research to other members of the public? If so, why?

Yes, I would. I believe research is important and anyone who can spare the time should do it, as it is important that things evolve and improve.

Why does PPI benefit research?

13 Jul

by Sally Giles, Research Fellow in Core PPI Research theme and Philip Hammond, PPI Coordinator

PPI blog post_July2017

Why do PPI?

“All organisations should seek out the patient and carer voice as an essential asset in monitoring the safety + quality of care” Berwick Review, July 2013

We believe that including the patient voice in our research makes it more meaningful and relevant to the real world.  We have experienced examples of when patient feedback has influenced our research.  As part of the Greater Manchester PSTRC we wanted to look at how PPI impacted on our research in an academic context.  To do this we had a look at the academic literature, firstly to find out why people involve members of the public in their research. We discovered that people who use health services can help to ensure that issues that are identified and prioritised are important to them and therefore to health care, public health and social care as a whole.  Public involvement can help to ensure that money and resources are not wasted on research that has little or no relevance and that being involved in research can help empower people living with a medical condition.  We used this as a basis to develop our own PPI structure within the Greater Manchester PSTRC.

The Research User Group (RUG)

The RUG started off as a group of 12 members of the public, who met every 6 weeks.  Each of the research themes within the Greater Manchester PSTRC were allocated 2 or 3 members to their theme.  A RUG evaluation highlighted that some researchers were heavily reliant on their aligned members for all projects within their theme.  It also highlighted that it was challenging to see how the RUG was having an impact on research, as this impact was mainly happening at project level.   Based on feedback of RUG members and in an attempt to widen involvement by bringing in more associate members of the public, a restructure to the RUG took place.  It was agreed that there should be a split between governance and project level PPI.  This new structure was implemented two years into the centre.

The restructure enabled us to focus more on project level PPI, and we have a number of examples of how PPI has benefitted the research on specific projects.  Some examples follow below:

1.   Multimorbidity Research Advisory Group (MRAG) was set up to involve patients and carers in the development of resources and new research projects for the Multimorbidity theme.  It consisted of 18 group members who provided feedback on research, shared ideas, helped to set research priorities and supported two applications for further funding.

2.   In the Interface & Informatics theme patients and public contributors have been involved in enhancing research by taking part in a number of  sessions aimed at investigating the relevance of an established patient portal for patients with long term conditions (PatientView) and identifying strategies for improvement. This group also commented on draft study protocols, designed and co-facilitated a larger workshop and helped to identify social media and patient associations as an additional recruitment strategy (resulting in 25% more recruits).

3.      In the Medication Safety theme members of the public have been involved in the recruitment of participants for focus groups, co-facilitation of focus groups and coding of transcripts using an existing framework.

4.      For the Core theme members of the public have helped develop the Primary Care Patient Measure of Safety (PC_PMOS) study.  They helped to develop the items to be included in the PC_PMOS and recruited patients in GP practices to complete the PC_PMOS, Patients were able to relate more easily to the PPI members than the research team, which helped to increase participation in the study

5.      In the GP theme there has been public and stakeholder involvement in the patient safety guide project via 3 different involvement groups with key stakeholders.

Thoughts for the future

Our advice to anyone wanting to develop a PPI structure within a large (or small) research centre is to plan carefully by starting with a clear strategy, but be willing to accept that this will constantly change as the needs of those involved evolve.  Involvement needs to continue to be an iterative process, people have different (and changing) needs and get involved for different reasons, and equally research studies have different aims and priorities which need to be addressed when planning involvement.  We see involvement as being broader than patients or members of the public.  Often the end users of our research have been health professionals and as such, our definitions of involvement and engagement have evolved to include all relevant stakeholders.

Black and minority ethnic involvement in health research: Veena Parmar

20 Jun

Veena Parmar_photo_June 17

Veena Parmar has been providing a patient/public perspective for NIHR Greater Manchester PSTRC student Shoba Dawson’s PhD project about barriers to involvement in research among BME (black and minority ethnic) groups.  In this article she chats to Jill Stocks (Research Fellow, Core theme) about her experience.

Jill: Hi Veena, tell me a little about your background.

Veena: I am a second generation Indian born in Nairobi and educated in the British colonial system. My family is a blend of Anglo Indian Portuguese culture. It’s great when we have family gatherings to exchange our various views. The Portuguese family go on about Vasco da Gama, Christopher Columbus, Cork, port wine and the spice trade while we Anglo Indians brag about the industrial revolution, trains, the cotton and motor industry, and so on. Since being married I have lived in and around Manchester.

Jill: Before becoming involved with the Greater Manchester PSTRC what did you know about Patient and Public Involvement (PPI) in research?

Veena: I had only heard about people who were participating in clinical trials, I had some friends who were part of a rheumatism trial.

Jill: What made you decide to become involved in PPI?

Veena: At first I was dubious but Shoba really encouraged me to come and meet her and the other PPI partner. At the meeting I found the topic really interesting, we read some case studies and gave our opinions.

Jill: What have you personally got out of the involvement?

Veena: I learnt a lot and found myself reflecting on my own multicultural experience through our discussions. Shoba is a kind person and always very supportive.

Jill: What support or advice were you able to provide?

Veena: I offered advice on how to get BME communities involved in research. I had lots of ideas and suggestions about how to work through community leaders and how to approach women in socially-conservative communities.

Jill: What aspects did you enjoy least or find difficult?

Veena: I was asked to give a presentation and imagined it would be in a theatre with a large audience so I felt unable to do it. In fact it was an informal talk with a small audience so I felt a bit disappointed because I would have felt confident to talk if I had known that.

Jill: What advice would you give to anybody thinking about getting involved as a PPI partner?

Veena: Make sure you understand what you are getting yourself in to and ask questions. Keep an open mind and you will learn a lot.

Jill: Would you do more PPI in future?

Veena: Yes – absolutely.  Although I am about to retire and hope to do some travelling so it would have to be as a short term commitment…