Patient & public involvement
What is patient safety and patient safety improvement?
This research programme is designed to support the NHS in improving patient safety for all patients. The best organisations work hard to identify and investigate any failures in patient safety so that they can put matters right and learn how to prevent any such failures in the future.
We all expect our health care to be as safe as possible. We understand that some treatments have side effects and that some interventions carry an inevitable risk, and this should always be made clear.
We expect to be protected from avoidable harm, for example, a delay in diagnosis or the wrong medication or poor communication. We should also expect to feel safe when we need health care.
However, research both in the UK and internationally shows that avoidable errors in healthcare continue to occur. Recovery may be delayed, treatment may be less effective, and in some instances, patients can be left with pain or disability or worse.
Patient safety improvement is about understanding the causes of errors in health care and seeking to prevent them. Some errors are caused by one person making a mistake, others by problems within a team or a department, or even across a whole organisation or system. Most hospitals provide excellent care in very safe wards and departments. But even those with the very best reputations may still put patient safety at risk in some areas.
What is patient safety research?
The National Institute for Health Research (NIHR) funds the NIHR Imperial Patient Safety Translational Research Centre (PSTRC). This partnership between Imperial College and the local NHS conducts research into all aspects of patient safety, with a focus on specialist health services. Our sister PSTRC in Greater Manchester focuses specifically on primary care.
Our research is ‘translational’. This means that we work with clinicians and with patients and the public to make sure that the findings from our research are put into practice.
We are trying to answer questions such as:
- How can we best involve patients, their carers and families in patient safety?
- How should we use health services data to identify any failures in patient safety?
- How can we improve how safety incidents are reported and what can we learn from them to prevent these happening again? How can we use design and technology to improve patient safety?
- How can we enable clinical teams to work together to keep patients safe?
- How can we use organisational or 'systems-based' approaches to protect patients from harm?
- How much does it cost to improve patient safety, and much would we save if we keep patients safe?
What does ‘patient and public involvement and engagement’ mean?
Patient and public involvement and patient and public engagement are different. Both are important and can be linked.
Patient and Public Involvement
INVOLVE (www.invo.org.uk) is a national advisory group that was established in 1996 and is part of, and funded by, the NIHR, to support patients and the public to be involved in research.
INVOLVE defines patient and public involvement in research as research being carried out ‘with’ or ‘by’ patients and members of the public rather than ‘to’, ‘about’ or ‘for’ them.1 This includes, for example, patients working in partnership with researchers to come up with research priorities, offering advice as members of a project steering group, commenting on and developing research materials, undertaking interviews with research participants, interpreting data and disseminating the results.
A patient (or service user) is someone who is currently receiving healthcare or has recently completed an episode of care. We want to involve more patients in the research conducted in the centre; partnering with patients means that the research can benefit from their unique experiences and understanding.
We also want to work with carers and those who advocate on behalf of patients including charities to ensure that we can incorporate their wider perspectives on patient safety research.
Members of the public can also become involved as all are potential patients in the future, and many contribute to funding the NHS through taxation.
Patient and Public Engagement
Patient and public engagement refers to information and knowledge about research being shared and discussed with patients and the public, ideally as a two-way conversation. This includes:
- Talks and discussions at events (e.g. conferences, science festivals and local meetings);
- A tour of a hospital or centre;
- The sharing of research findings from a study with the participants of the study, other patients and/or members of the public;
- Media communication (e.g. TV programmes, newspapers, videos, social media and blogs).
How do we work in partnership with patients and the public?
We have a full-time Patient and Public Involvement and Engagement Manager, Anna Lawrence-Jones, who leads on involving and engaging patients and the public across the NIHR Imperial PSTRC. She works closely with Dr Stephanie Archer, Patient and Public Involvement and Engagement Researcher-Champion.
We work alongside two Patient Representatives; Yasmin and Jill advise the centre on how best to work with patients and the public:
Yasmin Alibhai-Brown is a radio and television broadcaster and has written extensively about health and race, exclusion and diversity. She has been voted one of the top ten most powerful Asians in Britain, and one of the most influential voices on the left.
Jill Lloyd is a physiotherapist who has spent many years working in the NHS in West London with patients with rheumatology and orthopaedic conditions, developing and leading patient education classes in arthritis.
The following examples illustrate some of the ways that patients and the public have worked in partnership with across the research cycle:
- By helping with the research direction of the centre: We held an event in August 2016 with a diverse group of 37 patients and public members, many of whom had not been involved with research before. We consulted with them on the future potential research themes of the centre and their feedback helped improve our application for funding, including how we will involve and engage patients and the public.
- By collecting and analysing information: We trained and supported four patient representatives to collect and analyse data for the Inpatient Medication and Patient Relationships – Electronic SystemS (IMPRESS) study. We went on to explore how this had worked from both patient and public members’ and researchers’ perspectives with the aim of informing and enhancing the future role of patients/public in carrying out health services research. Read the learnings in the publication of data collection and the publication of data analysis.
- By discussing our research with us: We have run various public engagement events such as a stall at the Imperial Festival. Also, we collaborate with the Healthcare Innovation Exchange (‘HELIX’) Centre to develop products to improve patient safety. We have involved patients and healthcare professionals in the development of these products. The HELIX (at the St Mary’s Hospital campus) is open on the last Friday of every month for anyone to pop in and chat about ongoing projects. You can follow us on Twitter and our blog.
Our future strategy
We will continue to work in partnership with patients, carers and the public in shaping our activities so that our research translates into better healthcare. We will do this by involving individuals and local communities to make sure that we respect the diverse health needs in North West London and beyond. We will build on progress to date, learn from others and share knowledge. We will look for creative ways in which the public and patients can contribute to our research.
We are consulting with patients and the public on our draft strategy (below) over the coming months.
Ensure our research is relevant to patients and the public, by setting up a Priority Setting Partnership with the James Lind Alliance, where 10 top research priorities are identified with patients, the public and healthcare professionals (see more info below).
Build capacity and expertise of researchers at the centre to effectively involve patients and the public in research and engage with them about findings, by delivering training and resources.
Support patients, the public and carers who are involved in our research, through training, mentorship and remuneration for their input as per the INVOLVE guide.
Support researchers to involve a diverse group of patients and the public in their research, by establishing the Research Partnership Group (around 25 members). Some of the members will meet regularly to discuss new research plans and current activities with researchers and clinicians.
Embed strong governance by creating a Patient and Public Involvement and Engagement Advisory Board (including members of the Research Partnership Group and key external patient and public involvement champions and the Patient and Public Involvement and Engagement Researcher-Champion), who will give recommendations and updates to the centre’s Executive Board.
Share learning forr continuous improvement, by strengthening links with the patient and public involvement and engagement initiatives across North West London and beyond.
Engage and communicate about our research in creative ways, by co-designing a communication strategy with patients and the public from diverse communities.
James Lind Alliance
A draft protocol can be viewed here: Protocol Safe Care of Adults with Complex Health Needs v4 - August 2017
Terms of reference for the Steering Group can be viewed here: Steering Groups Terms of Reference v3
Get in touch
If you are interested to hear more or to be involved any of the work above, please get in touch with:
Patient and Public Involvement and Engagement Manager
Contact Anna at firstname.lastname@example.org
You do not have to have had experience with research or patient and public involvement prior to being involved. If experience for a particular activity is needed, training can be provided. If you have any specific access or disability needs, please let us know so we can best support you.
Patient and public stories
Involving patients in their own safety - webinar
How IMPRESS and PRoSOCT involved patients in their research
Organised by the Health Foundation, the webinar discussed involving patients in their own safety.
- Professor Bryony Dean-Franklin, Executive Lead Pharmacist (Research), Imperial College Healthcare NHS Trust.
- Dr Sara Garfield, Research Pharmacist, Imperial College Healthcare NHS Trust.
- Professor Pam Dawson, Associate Dean, Health and Life Sciences, Northumbria University.
- Dr Jason Scott, Research Associate, University of Newcastle
- Helen Crisp, Assistant Director of Research, the Health Foundation.
Patient & Public Involvement & Engagement Strategy
PSTRC is moving towards co-production
On 25 January 2017, a group of clinicians, researchers, patients and members of the public attended our Patient and Public Involvement and Engagement Strategy Working Group Meeting.
Asthma management app
Inpatient Medication and Patient Relationships
Patient and public involvement
Why patient and public involvement is important
Co-producing our communications strategy
NIHR Imperial Patient Safety Translational Research Centre met with a diverse group of patients and public members to co-produce the communications strategy for the Centre.