Patient & public involvement
What is patient safety and patient safety improvement?
This research programme aims to improve 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 to the patient, carer and family members.
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 healthcare.
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 healthcare 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.
Our research is ‘translational’. This means that we work with clinicians and with patients, carers 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
INVOLVE defines patient and public involvement in research as research being carried out ‘with’ or ‘by’ patients, carers and members of the public, rather than ‘to’, ‘about’ or ‘for’ them. This includes offering advice from a patient/carer/public perspective and working in partnership with researchers to, for example: come up with research ideas, comment on research documents, help recruit patients to studies, carry out research (e.g. doing interviews or analysing data), and communicate about research to others.
A patient (or service user) is someone who is currently receiving healthcare or has recently completed an episode of care. Research can benefit from patients’ unique experiences of the healthcare system and/or their understanding of their condition. Carers or family members of patients can bring a different perspective, particularly giving insight into the experience of those who do not have capacity to contribute themselves. Members of the public can also become involved in research, for example in research on populations (e.g. “how to discourage members of the public from expecting antibiotics to be prescribed for colds and sore throats?”).
Lay partner is a term used to describe patients, carers and members of the public with a specific role in a research study, working in partnership with researchers and healthcare professionals.
Co-production is an approach used in some research studies in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of new knowledge.
Involving patients, carers and the public in research can help to ensure research projects are ethical, feasible, designed appropriately for the needs of the patient, recruit and are more likely to be relevant to patient needs and translated into policy and practice.
Public engagement refers toinformation about research being shared and discussed with patients, carers and members of the public, ideally as a two-way conversation. This includes:
- Talks and discussions about research at events (e.g. conferences, science festivals and meetings);
- A tour of a hospital or research 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).
Contrary to involvement or engagement, participation is when research is carried out “to”, “about” or “for” people. For example, this includes when a patient is having a new treatment tested on them as part of a clinical trial or when a patient, carer or member of the public are having data about them collected and analysed e.g. being interviewed about their experience in hospital as part of a research study.
How do we work in partnership with patients, carers, and the public?
We have a full-time Patient and Public Involvement and Engagement (PPIE) Manager, Anna Lawrence-Jones, who leads on the delivery of the PPIE strategy. Anna works closely with Professor Bryony Dean Franklin, the PPIE Academic-Champion.
The PPIE Advisory Board was established in May 2017. It includes lay partners, research theme leads and experts in PPIE. It is co-chaired by a lay partner, who also sits on the centre’s Executive Board. To date, the PPIE Advisory Board has met 5 times. It has signed-off the PPIE strategy, including governance structures and ensuring remuneration for lay partners is in line with INVOLVE guidelines. It also oversaw the design of the Research Partners Group (RPG, see below), and advised on the first round of appointments.
The following examples are some of the ways patients, carers, and members of the public are working in partnership with us, across the research cycle:
- By identifying research priorities: We have set up a Priority Setting Partnership with the James Lind Alliance about safe care for adults with complex health needs. 10 top research priorities will be identified by patients, carers, the public and healthcare professionals.
- By developing PPIE plans for research projects: The Research Partners Group, a diverse group of 11 patients, carers, and public members, was established in August 2017. It reviews research projects, PPIE plans and link researchers to patient/carer/public groups, where appropriate. To date, members of the group has reviewed 16 research projects and their PPIE plans. The group have also met several times for business and development meetings.
- By managing research projects: Several of our projects have lay partners as key members of the project steering group. For example, our research project about analysing patient experience data has a patient co-investigator, who has been involved from development to delivery of the project.
- 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 on data collection and the publication on data analysis. We are using a similar methodology in several other current research projects.
- By co-creating public engagement activities: We worked with community members to put on the True Cut patient safety play (in collaboration with the Masters in Surgical Education and David Alderson, the playwright) with a discussion afterwards. We also worked with various Imperial centres and lay partners to run the patient and public involvement café at Imperial Festival 2018.
For more information please see:
James Lind Alliance
We have set up a Priority Setting Partnership with the James Lind Alliance about safe care for adults with complex health needs, to help ensure the patients, carers, the public and healthcare staff, are identifying research priorities in this space. Through a survey, we askedthese groups for their concerns and questions they would like to see answered to help make care safer for adults with complex health needs.
The next stage of this project will be for patients, carers, the public, and healthcare staff to tell us which are the most important topics suggested in the first survey. The top 10 priorities for research will be then agreed at a workshop. The centre will carry out research in some of these areas and widely publicise the results to funders and researchers, so that others can do research in areas that are most important to patients, carers and healthcare staff.
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
Visit the website for more details.
Our Patient and Public Involvement and Engagement (PPIE) strategy has been informed by the current status at the centre, research evidence, best practice and the National Standards for Public Involvement in Research and builds on the 2016 strategy. Our aims and objectives, developed by patients, carers, members of the public, researchers, PPIE experts, and healthcare professionals, aim to embed PPIE at both a centre level and in individual research projects. We will work together to create inclusive opportunities, with appropriate support, training and governance, capturing impact and communicating our work. A more detailed implementation plan will go online soon.
Our vision is to meaningfully involve patients, carers and members of the public both Centre-wide and in individual projects, to improve the relevance and quality of the research we do. We will be innovative in PPIE, share our learning, and contribute to the PPIE evidence base. We will engage with the public about our work to raise awareness about patient safety and to encourage new people to engage with, and be involved in, patient safety research.
1. To embed good governance for PPIE within the PSTRC
It is important to ensure that patients, carers, and members of the public have a voice in decision making at the Centre and that there is a clear line of accountability.
2. To build capacity within the PSTRC to carry out high quality PPIE
Researchers, healthcare professionals, patients, carers, and members of the public should be appropriately developed, supported and empowered to carry out PPIE.
3. To increase the diversity of the voices involved in research at the PSTRC
It is important to expand our network of patients, carers, and members of the public, and hear more from those who are seldom heard, to ensure our research is accessible and relevant to everyone.
4. To ensure the PSTRC is connected with other organisations carrying out PPIE
Collaboration and sharing learning are important to ensure we are building on knowledge, best practice and existing resources in relation to PPIE.
5. To co-produce projects, be more innovative and add to the PPIE evidence base
Appropriately co-produce some research projects from start to finish with patients, carers, members of the public, researchers, healthcare professionals, and other stakeholders, including more explicit sharing of power. We believe that there is potential for more innovation in PPIE, to push boundaries and build the evidence base.
6. To capture and monitor the impact of our PPIE activities
It is important to capture the impact of our PPIE activities, to support continuous learning and iterate ways of working to improve outcomes. Demonstrating the value of PPIE in research will also help to maintain PPIE as a priority and shape how this should best be done.
7. To communicate about our research and our PPIE activities
It is important to communicate about our work to patients, carers, the public, researchers, healthcare professionals, policy makers, and industry, to ensure our research is translated into policy and practice and to encourage involvement and collaborations. We will use different approaches to communication with these different groups. We wish to raise the Centre’s patient safety and PPIE profiles by sharing our activities and learning, nationally and internationally.
Get in touch
We welcome comments from readers. If you have any questions or are interested to be involved any of the work above, please get in touch with Anna:
You do not have to have had experience with research or patient and public involvement prior to being involved. If you have any specific access or disability needs, please let us know so we can best support you.
Patient and public stories
World Patient Safety Day
Highlights from our inaugural World Patient Safety Day conference
On 17 September we held our first-ever World Patient Safety Day conference, uniting thought-leaders, researchers, patients and policy-makers to raise awareness of patient safety as a global public health issue.
Watch highlights from the event including interviews with Dr Aidan Fowler, NHS National Director of Patient Safety and Dr Neelam Dhingra-Kumar, Coordinator, Patient Safety and Risk Management, World Health Organization.
Video credit: Philip Noakes
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.
True Cut: Making sense of our mistakes
Supported by Imperial's Societal Engagement Seed Fund
In 2017, the Imperial Patient Safety Translational Research Centre (funded by the National Institute for Health Research) and the Imperial College Master’s in Surgical Education (in the Department of Surgery and Cancer) won funding from the Imperial College London’s Societal Engagement Seed Fund to put on a scripted reading of a play with a discussion afterwards. The play, about a young surgeon who makes a mistake during surgery, was written by David Alderson, a consultant Ear, Nose and Throat (ENT) Surgeon based at Torbay Hospital. Torbay and South Devon NHS Foundation Trust also supported the project.
To read more about the project please click here.
Film Credits: Tom Walker Film
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.