How to involve patients in their own care

Support patients to manage their condition better

Evidence tells us that when patients are actively involved in their own care, treatment and support can improve outcomes and experience for patients.

How to get involved

Everyone involved in care should advocate for the experience, voice and presence of patients, carers and the public to make a real difference to research in the NHS in order to improve health and well-being.

We all know importance of maintaining a healthy lifestyle through exercise and a healthy diet, but what else can be done?

Help and get actively involved in the work of the NIHR, the National Institute for Health and Research

In their website you'll find out about research that has taken place, you can take part in a free online course and contribute with questions and ideas for research.

The National Health Service (NHS) states:

The NHS is there to improve our health and wellbeing, supporting us to keep mentally and physically well, to get better when we are ill and, when we cannot fully recover, to stay as well as we can to the end of our lives. It works at the limits of science – bringing the highest levels of human knowledge and skill to save lives and improve health. It touches our lives at times of basic human need, when care and compassion are what matter most.

The NHS is founded on a common set of principles and values that bind together the communities and people it serves – patients and public – and the staff who work for it.

The Constitution Handbook adds:

Research is a core part of the NHS. Research enables the NHS to improve the current and future health of the people it serves. The NHS will do all it can to ensure that patients, from every part of England, are made aware of research that is of particular relevance to them.

Going the Extra Mile

The NIHR in England in their Going the Extra Mile report provides the strategic vision and direction for our work in engaging and actively involving patients, carers and the public in all aspects of research. It sets the following goals:

By 2025 we expect all people using health and social care, and increasing numbers of the public, to be aware of and choosing to contribute to research by:
- Identifying future research priorities and research questions
- Informing the design and development of innovations
- Participating in research studies
- Advocating for the adoption and implementation of research in the NHS

Both health workers and patients should ensure that they contribute to INVOLVE and ensure that information held on their website about where they work or receive care is accurate.

What's happening elsewhere?

We do need to consider what is happening elsewhere by exploring, for example: the European Patients‘ Academy on Therapeutic Innovation (EUPATI), the Irish Platform for Patient Organisations, Science and industry (IPPOSI). Further afield there is the Canadian Institutes for Health Research and their Strategy for Patient Orientated Research. You may also choose to look at the developments of Involving People in Research in Western Australia and the Patient Centred Outcomes Research Institute (PCORI) in the USA. These cover many of the leading economies and we risk deepening the health inequalities unless we also look at what is happening in there countries.

The great work of charities

There are many charities who focus on health research and others who carry out research themselves. Many are now actively involving patients and the public in the research that they fund. This ranges from priority setting, improving study design and sitting on funding decision making panels.

The Shared Learning Group on Involvement brings together a number of people working in charities doing patient, public involvement and engagement. They also have a ‘research sub-group’. Parkinson's recently produced an excellent guide for their researchers on patient and public involvement. The Association of Medical Research Charities (AMRC) is a further good source of information.

The role of Universities

There is a significant amount of public involvement taking place across all academic institutions. This is partly driven by the Research Excellence Framework which requires research work to have ‘reach’ and ‘significance’. It is worth finding out about the Academic Health Sciences Network (AHSN) and the local Collaborations for Leadership in Applied Health Research and Care (CLAHRC)

Take a look at current MDS clinical trials

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