PPI guidelines

From lay input in research to how a clinic runs, from medical revalidation to patient forums, healthcare professionals increasingly need effective patient input if they are to provide a relevant, sustainable and effective service.

Conversely, patients and the public have the right to contribute to, advise and inform not just the professionals who care for them, but also the service structure within which they are treated.

When this double dynamic works well, it results in a responsive NHS service that has the confidence of all concerned. It also provides both healthcare professionals and patients the knowledge and voice to defend NHS services that are placed at risk.

However, until now there has been little, if any, definitive support for healthcare professionals about how best to engage patients and the public across all aspects of healthcare. If there was to be a random poll on any High Street asking ordinary people if they know how they can get involved, most would not know that any opportunities exist at all.

Public and Patient Involvement (PPI) experts from the Collaboration for the Advancement of Medical Education and Research (CAMERA) at Plymouth University Peninsula Schools of Medicine and Dentistry (PUPSMD), have been supported by the Health Foundation, to bridge these knowledge gaps and close the disconnect.

They are to publish the first definitive guide book for all health professionals about how to engage and work with patients and the public across a wide range of health disciplines and across different activities, including services, research, education, policy and regulation. Running parallel to the guide book is an animation which explains to patients, carers and the public the many ways in which they can have a say in and influence the care they receive.

Both the guide book and the animation will be made available via the CAMERA website and will be sent out to hospitals and doctors’ surgeries.

The work is based on the evidence of PPI research carried out by CAMERA on behalf of the Health Foundation, as well as an extensive review of academic studies and information provided by patient groups and others on the internet. The CAMERA research has included round table discussions and interviews with people from all walks of society - from upmarket postcodes to homeless centres, city centre cafes to church halls, and country pubs to international student clubs.

Dr Sam Regan de Bere from CAMERA led the PPI research. She said: 

“The overwhelming finding we came away with was that, regardless of background, age, gender, and other parameters, people really want to know more about how they can interact with the NHS in a positive way – whether to give feedback to help their doctor with their professional development, have input into how services are run, get involved with defending services in an appropriate manner or contribute to research.”

Rebecca Baines, researcher on the study, added: 

“On the one side we saw eager patients and members of the public who wanted to get involved but didn’t know how: on the other we have seen health professionals who don’t know how to start to get people involved – let alone how to keep them engaged and benefit from mutual working.”

The team believe that the guide, book, and animation combined will increase meaningful interaction between health professionals and patients and public – to the benefit of the future of the NHS.

Sam commented: 

“So much of what is perceived to be ‘wrong’ about the NHS can be attributed to a disconnect between the NHS, those who provide the care, and those who receive it. We want patient and public participation to move beyond making complaints to a culture in which we all work together to develop an NHS which is beneficial for everyone – and facilitating a healthy dialogue where everyone understands their roles is a great start. The opportunities for collaboration are out there; people just need to know exactly what they are and what they can do to get involved.”

Niall Dickson, Chief Executive at the General Medical Council, said: 

“At one time patients pretty much did as they were told – today they should be partners in their own care and sources of advice about how care should be organised. As partners, the feedback patients provide can be invaluable – it can make care safer, identifying where improvements are needed and it can boost the confidence of medical staff by highlighting good practice. Every doctor in the UK now takes part in a system of regular checks to make sure they are competent and fit to practise – as part of this every doctor has to obtain feedback from his or her patients – research has shown that doctors find this the most useful information they receive, helping them to reflect on their practice. Since the system was introduced under four years ago more than 1.6 million patients have provided feedback on their doctor.” 

Helen Crisp, Assistant Director of Research at The Health Foundation, added: 

“There’s a great desire to get service users, carers and the wider public engaged with health services. This is true at national policy level – wanting to reap the societal and economic benefits of people managing their care and appropriately using services, to health care workers - who want to understand how their service can better deliver what people really need, to patients - who would like a chance to get their views heard. Yet there’s a dearth of information on how these aspirations can become a reality. For 10 years the Health Foundation has supported research and practical approaches to person-centred care and wider co-production of services. The work by the team in Plymouth that has resulted in this guide and supporting animation provides practical wisdom that can help to bring providers, policy makers and service users together for genuine exchange of views and experience. The Foundation is delighted to have funded this work. Anyone who wants to think about how to engage with service users and the wider community should find new ideas and inspiration in the handbook and animation.”

Patients and public involved with this project:

Anastasios Plessas
Coming originally from Greece, I was invited to join a focus group discussion about the views of non-British people on public involvement in the process of doctors' revalidation. Being a healthcare professional myself, I was aware of what the revalidation process entails. Exchange of different viewpoints with people of different cultural backgrounds and experiences of different non-UK healthcare systems was rather interesting. A common theme of our discussion was our trust in doctors as a profession. The feedback towards healthcare services seemed like something which does not really exist in other countries; but we all agreed that sharing the views about care we receive by our doctor can be invaluable, in terms of improving the quality of the communication between the doctors and their patients. Nonetheless, we argued that as a non-medically qualified person, a patient, including ourselves we are more likely and feel more comfortable rating their attitude and communication rather their technical skills. I enjoyed being part of the project. I hope that this project will reach the GP surgeries and doctors in other setting so the patients are more aware of what is the meaning of the feedback they are asked to give and also understand its impact for their doctor's fitness to practice. ''

Edward Goodman
I am a retired Road Safety Officer in the local government service, now in my upper 70s. I believe I was recruited into the PPI project through my membership of the Casualties Union, where I sometimes work for Plymouth University. My role in the project was as a member of the central committee. I also organised a local focus group in my village to gain a wider response to the project and interviewed a member of someone else’s focus group. I found the work very interesting as it looked at aspects of the NHS that I had never really considered. It also made me think at a different level than I normally do, which is valuable to someone in my situation – who could easily slip into things that are not mentally challenging. The results could help to improve the NHS by ensuring that doctors and other NHS staff are motivated to keep themselves up to date in advances in their specialties. It is far too easy to assume that one has ‘the piece of paper’ and freewheel from there on.

Kitty Heardman
I’m a former lecturer in education form Plymouth University and also a Lay Representative with both PUPSMD and SW Peninsula Postgraduate Education. I recruited volunteers for the round table discussions and chaired one of the discussions at my home, then went on to do some thematic analysis of the transcripts with other team members. This was important for me in terms of developing my role as a Lay Representative and also because I am planning to continue with my academic career doing a PhD on Lewy Body Dementia, for which some of the methodology will be discourse analysis, so it was very useful to me to continue working with academics, having left my lecturing post, and to build further confidence in research skills. In fact, I think doing this has given me the confidence to go and prepare a PhD proposal for a Mayflower Doctoral Scholarship, and in health, rather than education. I think the outcome of this research will really benefit the NHS as revalidation needs to be a robust process and professionals can only improve if the listen to feedback not only from their peers and superiors but to those to whom they provide the service.

Martha Paisi
With regard to the revalidation process itself, by having the opportunity to provide constructive feedback, patients will feel more valued; as a result, I believe this will increase their trust to the healthcare system as well as overall satisfaction. The doctors will also be able to address areas of weakness that have been identified by their patients but also to build upon their areas of strength. Therefore, I anticipate that overall the quality of healthcare delivery will improve. I believe the project will benefit NHS enormously as it provides important insights into the views of both patients/the public and medical doctors regarding the revalidation process (and as such allows those primarily concerned to have an active role); amongst others, these include facilitators and barriers to its successful implementation. Hence, the outcome of this work is likely to enhance the implementation of the revalidation process as it is built upon the perspectives of those primarily concerned.

Nigel May
With increased emphasis on patients being engaged/involved in all aspects of the development and running of the health service then it is essential that all health/care professionals should be aware of the importance of involving their patients in their care and how this can be achieved. Likewise, it is important that the wider public understand how the health services work and how they can be accessed – this will require effective public communication techniques by health professionals. I have benefited from working with academics and students, understanding the pressures and constraints that they are working under but also the commitment they have to working with patients and the public. Anything that improves the ability of health and care professionals to understand how they might better communicate with patients and public must be for the greater good. Again, it is important that these health professionals recognise that the systems that they put in place and operate are there for the patients and NOT for administrative convenience! It is therefore essential that throughout the training of health/care professionals they are exposed to comments of patients and the public.

Sam Crowther
I am 24 years old and work as a police officer in Cornwall. Before that I used to be a Lifeguard so have had lots of experience working with different people. The research team approached our friendship group about being involved in some research exploring PPI in medical revalidation. I volunteered to chair our meeting which was an interesting and insightful experience. First thing that became really apparent was a lack of revalidation awareness amongst all of us apart from one. It seemed contradictory that a people's service failed to tell the people involved about the opportunities and systems in place to keep us safe. I think the animation that has come out will be a great way of letting all sorts of people know the different opportunities they have to get involved. It’s engaging and can be understood by a variety of people both young and old. It could also potentially save organisations money by streamlining currently the processes and identifying areas of need from a patient perspective

Tony Meek
I am 70 and a retired banker and Anglican priest (Ordained as a Non-Stipendiary Priest in 1983 while still working as a banker). I now assist in my local parish and also sometimes work as Ship's Chaplain on cruise liners. As I always say, a rotten job but someone has to do it and my poor wife has to come with me! During 34 years with the Midland Bank I worked in (and then managed) branches and was latterly at Head Office. I took early retirement at 52. My wife was a nursing sister, latterly a Community Nursing Care Manager, so the Health Service has always been close to our lives. She retired in 2001. We have each needed care and operations for major conditions. From my banking career and priestly ministry I am very aware of the importance of involving customers/parishioners/patients in the planning of care delivery and assessment of its effectiveness. I have felt encouraged to learn of the efforts being made within the NHS to ensure this benefit is maximised.