Tag Archives: Patient and Public Involvement

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…

Greater Manchester PSTRC Dissemination Event: A Lay Delegate’s Perspective

28 Mar

by Moira Lyons, member of the NIHR Greater Manchester PSTRC Research User Group (RUG)

MoiraLyons_SaferPrimaryCare_image

As a Core Member of the Greater Manchester Primary Care Patient Safety Translational Research Centre (GM PSTRC)’s Research User Group (RUG), I was delighted to be invited to attend the Centre’s recent flagship dissemination event, “Safer Primary Care: A shared responsibility for system-wide learning”, which was held over two days at the Manchester Conference Centre. For me, the inclusion of members of the public in the delegate list (and not purely as spectators – several RUG members took part in the delivery of workshops, alongside researchers) underlined the genuine commitment to patient and public involvement apparent in every aspect of the Centre’s work.

It was very exciting to see the evidence of how much had been achieved over the last five years and to hear something of the plans for the new PSTRC! The atmosphere was one of expectation and enthusiasm and an inextinguishable optimism for the future. One theme resonated throughout – communication and sharing data. The more we can make use of the data available to us and share the information we have with all parties involved, the better it will be for everybody and the easier it will be to progress all aspects of patient safety. And what better exemplification of that than this event!

The speakers were relevant, informative and entertaining, the organisation was faultlessly streamlined – even the catering was of a high standard, plentiful and varied. A balance was struck between opportunities to listen and learn and opportunities to discuss and ask questions. The poster session was a lively event, as presenters eagerly approached delegates who showed an interest in their work. The diversity of research within a common theme was impressive, as was the dynamic exchange of information that drew everybody in. For example, I had a very interesting discussion with two GPs about the differences in diagnosing practice between the UK and other parts of the European community; a Dutch GP will routinely consider the option of whether or not there is “a need to treat” – a relevant concept in view of the current concern about overprescribing. It was also good to hear a GP decry the use of the “one appointment one issue” policy that has been adopted in some general practices.

The Event Dinner at the Principal Hotel, on the evening of the first day, was well attended. The after-dinner speech, delivered by Professor Richard Roberts, was a highlight. Even though, as he pointed out, he was all that stood between diners and dessert, his audience was captivated by a superb combination of thought provoking comment and insightful reflection, informed by personal experience, as he considered the future of primary care.

The two days passed all too quickly.

NIHR Greater Manchester PSTRC Meet the Team – Philip Hammond

23 Nov

The second in our NIHR Greater Manchester PSTRC ‘Meet the Team’ series introduces Philip Hammond, the centre’s Patient and Public Involvement (PPI) Coordinator.

Philip Hammond_Meet the Team

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Collaboration “Down Under”

1 Jun

by Sally Giles, Research Fellow in Core theme

Australia workshop_group photo_cropped

Myself and Stephen Campbell, PI of the NIHR Greater Manchester PSTRC, were invited to present some of the work of the Centre at a recent patient safety workshop hosted by Deakin University in Melbourne. Stephen gave an overview of the work of the Centre, whilst I gave a talk on patient involvement in patient safety. Following on from this I was invited to spend 10 days working closely with Andrea Hernan (Research Associate) and colleagues at Flinders University in Warrnambool, rural Australia.   

This collaboration builds on some work that I undertook to develop a Patient Measure of Safety (PMOS) within a hospital setting.  Whilst I was in Warrnambool, Andrea and I worked on analysing some data from the field testing of the Primary Care Patient Measure of Safety (PC_PMOS) questionnaire and wrote a paper on the development of the PC_PMOS.  This paper builds on our recently published work* and is currently under review in BMJ Quality and Safety.  We were also able to make plans for a further study to validate the PC_PMOS.   Future plans include validating a primary care version of PMOS and hopefully conducting a joint workshop at North American Primary Care Research Group (NAPCRG) later this year.  

I was also able to make new connections  and links with other researchers in Australia, some of whom will be using the Patient and Public Involvement (PPI) evaluation questionnaire developed by myself and Jill Stocks within the Greater Manchester PSTRC.

 *Hernan A, Giles S J, Fuller J et al.  Patient and carer identified factors which contribute to safety incidents in primary care: a qualitative study.  BMJ Quality and Safety (in press).