Initiative designed to bring health and social care professionals and patients and public together

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 working in partnership with the Patients Association with support from 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 and Patients Association websites 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 in collaboration with the Patients Association. 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."

Katherine Murphy, Chief Executive of the Patients Association, said:

"We are very pleased to have been involved in the development of this guide which has been desperately needed for a long time. We are always recommending more involvement with patients and families at all levels but are often asked for advice by staff who don't know how to do it. We hope the guide will be really useful in many different settings as not only does it have a strong evidence base but was also heavily influenced by people using services which makes it all the more useful and practical."

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."