Archive | Patient and Public Involvement RSS feed for this section

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…

NIHR Greater Manchester PSTRC Meet the Team – Sally Giles

12 May

The seventh in our NIHR Greater Manchester PSTRC ‘Meet the Team’ series introduces Sally Giles, Research Fellow in our Core PPI research theme

Sally Giles_Meet the Team_v1

Sally Giles_Meet the Team_v1Sally Giles_Meet the Team_v12

How can we improve safe communication and co-ordination of care between primary and secondary care?

19 Apr

Part four in the James Lind Alliance Primary Care Patient Safety Priority Setting Partnership blog series: Part One, Part Two, Part Three

by John Taylor, patient attendee of the JLA Primary Care Patient Safety PSP final workshop

JLA PSP Top 10_Number 3Question 1 for me is, have there been any high grade research papers published already on this subject? If yes, then are there meta-analyses showing useable findings, and how old are these and have the findings been overtaken by newer recommendations?

Acting as Devil’s Advocate I would ask ‘who has posed this topic’ and ‘what evidence has been the basis for it’ and ‘how reliable or high grade is the evidence?’

As a  patient with multimorbidity, I personally feel that communications and coordination of care between primary care in its broadest sense and secondary care are often multi-centred and compartmentalised by ‘treatment episodes’ only indirectly linked, and even then through less than state of the art IT systems which may or may not be multi-site interoperable, which makes communication often slow, occasionally lost in space or paper chases and definitely not entirely in the best interest of good patient care.

So, how could improvements which would benefit the whole system be researched and put into practice?

Should lessons be learned from commercial users of communication systems who successfully run large scale businesses and care for the wants and needs of customers in ways which fulfil demand and generate repeat business, i.e. satisfied end users, and also learn from systems which have failed in their purpose due to poor design or uneconomic cost over runs or just failing to understand the needs of the users. Best practice should produce the designed outcomes consistently and be adaptable to cope with new needs as they are identified and designed to do this with minimum disruption and cost, there are many Healthcare Providers who have produced local workarounds which suit the needs of patients and providers with safe communications and care, NHS England, NHS Digital or NIHR RfPB (National Institute for Health Research Research for Patient Benefit) might be the vector to investigate how these develop and how well they might scale up.

I am constantly amazed and delighted at how, for example, Amazon handle their returns communications and customer care, they will respond to a ring back request within seconds, take the details, issue a printable label, arrange pick up and confirm by email then refund or replace as soon as the item is received at their depot. If Amazon and others can do this why is it so difficult for primary, secondary and, dare I say it, social care to learn how to communicate safely, rapidly and without arguing over ownership between themselves and patients, so that information flows freely, accurately and safely through the system, benefiting patients and providers alike.

Accurate and timely information is the key to good outcomes and thus improvements need to be constantly sought and implemented, carrying on doing what we have always done is not an option.

What makes a ‘good’ GP?

5 Apr

by Golda Gibson, member of the Greater Manchester PSTRC Research User Group

GoldaGibson_Dr and Pt photo_Apr17_CROPPED

My guess is that for every person there will be a slightly different answer. We all want them to be knowledgeable, to know when something might be going wrong with us and to act decisively thus protecting us from further harm. Where we may differ will be in our personal relationship with our GP, what is perhaps important for one will not necessarily be the same for another. Within us we all have what are known as ‘trigger points’, areas controlled by our emotions, past memories good and bad of how we were related to in a given situation, the ‘building blocks’ of our emotional development that affect how we behave in many circumstances and those momentous moments when we can actually act objectively. You will all be aware of that instantaneous moment when you meet someone for the first time – and dislike them!!! How can that be? It is not THAT person that is the problem, it is our response to past negative experiences which that person has now triggered. This can happen between family, friends, colleagues, the person in the street and yes, with your doctor, he/she too is just another human being with all the ‘baggage’ we all carry around with us each day.  They and we, can be reactive, defensive, introverted, extroverted. They and we, can have home problems, family problems, car problems, even late night problems, but what we want in our exchanges is for our healthcare professional (and us) to be able to ‘place’ those problems where they belong.

When we go to the GP or any healthcare professional for that matter we are asking to be ‘made better’, we are unable to be ‘objective’ about ourselves. This childlike position is vulnerable and it is in this very situation when, if we are not received in a positive away the relationship can falter. What we are looking for is respect for our lack of knowledge, concern for our anxieties, interest in our suffering and empathic understanding of how we feel and why.

Are there such GPs about? Probably not that many but I am very lucky to have found one.

Four years ago when I first became ill my diagnoses floored me. ME!!! – (not M.E.) the one who exercised regularly, ate healthily, kept control over my weight and was still working in her 71st year in a very exacting job, I had become chronically ill, my body had let me down and all that NHS propaganda about the need for a healthy lifestyle hadn’t worked. To make matters even worse, twelve days after my diagnoses my husband had a stroke. In less than two weeks I had become a patient and a carer, my career was over and my whole world had changed irretrievably.

I met my GP not at the point of diagnoses but shortly after when treatment was being started and I was given an urgent appointment. His first words to me on entering his room were …’I’m so sorry’. Those were the first kind words I’d had said to me and they penetrated through this shocked state I was in. Without being fully aware of it I had made a mental note that day that this was the doctor I was going to deal with, this was a ‘feeling’ man, someone who without a word from me had recognised my anguish and made it his own, our ’emotional baggage’ had not got in the way of our first exchange, we were accepting of each other, I was vulnerable, sad, totally overwhelmed and angry, add to that my  ‘feisty’ personality and my anger could have destroyed the moment but his warmth towards me quietened me.  

During that first eighteen months he always made a 4-6 week follow-up appointment for me before I left his surgery, even though there were times I felt that perhaps I didn’t need it. He became my advocate, guiding me, advising me, listening to my concerns and always ready to respond. When treatment with one clinician or another wasn’t up to standard he responded. He never judged me, never made me feel I was a ‘difficult patient’ although I’m sure others might and have!  I ask questions and I expect answers and I know when I was being ‘talked down to’ with rubbish. My GP is never patronising, always and without exception he is pleased to see me, he likes me and I can tell. When I enter his office, time is mine, there is no clock saying ‘time up’, I am made to feel that I have as much time as I need.

As time went on my own condition worsened and also that of my husband. Through numerous ‘urgent’ moments my doctor was always there, guiding, advising and supporting. When I couldn’t get appointments to see him he gave me a ‘hotline’ that allowed me to make direct contact with him should I need it and a promise that he would always ‘fit me in’ should an appointment be necessary. He also connected me to a new innovative community caring system where I am able to make contact with a Nurse Practitioner directly on the day I need it if I became unwell and found it difficult to care for my husband.

My husband who was not initially with him but with another practice, is not very mobile, it is difficult for me to get him to the surgery, impossible at his previous surgery as they were on a main road next to traffic lights with no parking area whatsoever. My doctor has said to me more than once he would call and see ‘H’ at home if it would be easier for me! I have also known him just to phone me to ask how I am when he had not seen me for a while. Very rare qualities.

Some months ago I received an email from one of the doctor ‘comics’ that are delivered to the practices around the country and also electronically. In it an article asked if there was a deserving GP in your practice that was worthy of being nominated for a national champion award for the care of R.A patients. This was my chance to get my wonderful doctor recognised and acknowledged for his exceptional care to me and all his patients. I then had to set up a plan whereby I enlisted the help of the Assistant Practice Manager who in turn sought help from one of the other GPs in the practice to fill in a part of the form I couldn’t due to not being privy to that particular information, and then it was my turn to get my chance (only one) to write about this wonderful man. I knew it had to be written with a passion that conveyed just who he is and what he is to his patients. As I said, I was only going to get this one chance and they had only given me 400 words in which to do it!! There would be many practices and patients nationally who would be submitting their own nominee and there were only ten championship awards to be had in the whole of the country, my writing had to ‘stand out’, it had to make the reader ‘feel’ as I did – AND WE MANAGED IT – HE GOT THE AWARD!!! The ceremony took place at the House of Commons on the 2nd November and the awards were given by the Prime Minister Mrs Theresa May.

Afterwards he wrote me the most beautiful thank you letter in which he told me that the personal qualities I bestow upon him are really a reflection of myself. Doesn’t that just tell you what kind of a man he is. I am extremely fortunate and blessed to have such a doctor. In this crazy 21st century NHS, with reductions and shortages in just about everything, when talking (the same story) to just one more person makes you want to tear your hair out and you begin feeling as though it is you who are the problem. When you hear yourself getting sharp and snappy on the phone to one or other department and no one is actually listening and even if they listen and promise that what you’re asking for will get done – it then doesn’t get acted upon. When I reach that rock bottom moment I have my GP.

Thinking outside of the box: presenting patient safety issues creatively

30 Mar

by Sally Giles, Research Fellow in PPI Research and Jackie Nightingale, member of the Greater Manchester PSTRC Research User Group

In 2016 Sally Giles (Research Fellow, Core Theme) took part in the Academy of Creative Minds programme which brought together a dynamic, disparate group of artists, from composers to circus performers, directors to writers. These artists shared their ‘tricks of the trade’ with health researchers, to help them build confidence and expertise in using the creative arts to convey research messages in a more powerful and meaningful way.

As part of the programme Sally was required to work with one or more of the artists to produce a creative way of conveying a research message of her choice.  Sally worked with a circus performer to develop a way of highlighting communication issues in general practice and how this can affect patient safety.  As part of this process Jackie Nightingale (a member of the Greater Manchester PSTRC Research User Group) was asked to get involved in developing this performance.  Jackie played a starring role as the main patient in the scene.  Their full performance was a major part of the NHS R+D North West Annual Research Conference (video above).

Both Jackie and Sally thoroughly enjoyed the experience and would recommend the course to anyone who would like the opportunity to think outside of the box when trying to get research messages across in an enjoyable and innovative way.

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.