Welcome to the Patient and Public Engagement Theme
On this page you can read about:
- What we do
- Our approach
- Facts and figures
- Publications and reports
- Partners and collaborative relationships
What we do
- We work collaboratively across Northwest London using innovative methods and processes to facilitate real patient and public involvement in delivering quality improvements in healthcare
- We bring together patients, carers, community groups to make connections with healthcare professionals and link the expertise of service users to healthcare professionals
- We organise and facilitate collaborative workshops with patients, public and healthcare professionals
- We train, develop and support public and patient representatives to work collaboratively with healthcare professionals.
Our central hypothesis is that involving patients in quality improvement projects helps to ensure the improvement benefits the patient and is sustainable. Patients are directly impacted by our work and their input can make a difference in the successful delivery and ongoing realisation of benefits.
The role of patients within improvement science
We encourage patients to contribute with staff to our understanding of improvement tools and how these can be adapted for use with patients and multi-disciplinary teams
What we understand by the term "Patient and Public Involvement"
We recognise it is difficult to achieve universal consensus and in the context of our programme we find the following definition of engagement helpful:
"Working together to promote and support active patient and public involvement in health and healthcare and strengthen their influence on healthcare decisions, at both the individual and collective level" p.10
Coulter, A. (2011) Engaging patients in healthcare. Open University Press, Maidenhead.
To clarify the meaning of terms in relation to research, we direct you to the INVOLVE website
Rachel Matthews Programme Lead for Patient and Public Involvement
Meerat Kaur Associate Lead for Patient and Public Involvement
Conor Galaska Project Officer for Patient and Public Involvement
If you are interested in learning more about PPI with CLAHRC for Northwest London, please contact:
Conor Galaska, Project Officer
Phone 020 331 53047
NIHR CLAHRC for Northwest London
4th Floor, Chelsea and Westminster Hospital
369 Fulham Road
Facts and figures
- Since the first event, in January 2009, the PPI theme has hosted 12 of its own events, attended by over 300 different delegates
- Outside of dedicated PPI events,10 of the 15 collaborative learning and delivery (CLD) events have featured presentations and workshops about PPI
- There have been 5 "Effective Patient and Community Rep" programmes, enrolling 67 members of the public to support them to be more influential in their own interactions and if they are representing others
- Outside of PPI and CLD events, the theme has led 18 different workshops to increase knowledge and awareness of PPI with groups such as research fellows and junior doctors
- Funding applicants are required to complete application forms, followed by baseline assessments to describe their plans to involve people
- The number of teams planning to involve members of the public at a collaborative level, as opposed to just a consultation level, went up from 14% to 57% and then 82% from Round 1 to Round 3
- Activity is underway to see how well the levels of PPI stated at application level held up in practice, as well as measuring what positive impacts patient involvement had on each project
- Data from 6, 12 and 18 month project reviews is being analysed to look at the impact and levels of involvement
Publications and reports
Doyle C, D Bell, L Lennox. A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open. 2013;3(1)
Doyle C, D Bell, L Lennox. Experience as an Aspect of Quality: A Review of the Evidence. Patient Experience Journal Two: Metrics and Measures. 2012. Available at http://patientexperienceportal.org/
Matthews R, Cornwell J, Patient experience as a dimension of quality and nursing practice. BJCN. 2012; 7(9):450-52.
Aljuburi G, Okoye O, Majeed A, Knight Y, Green S, Banarsee R, Nkohkwo A, Ojeer P, Ndive C, Oni L, Phekoo K. Views of patients about sickle cell disease management in primary care: a questionnaire-based pilot study. JRSM Short Reports. 2012;3(11):78.
Luchenski S, Balasanthiran A, Marston C, Sasaki K, Majeed A, Bell D, Reed J. Survey of patient and public perceptions of electronic health records for healthcare, policy and research: Study protocol. BMC Medical Informatics and Decision Making. 2012:12;40.
Kaur M. Patient and public involvement in planning and executing research. JuniorDr. 2012:12;13.
Doyle C, Reed J, Woodcock T, Bell D. Understanding what matters to patients - identifying key patients' perceptions of quality. JRSM Short Reports. 2012;1(3).
Matthews R, Wilson S, Valentine J, Nota J. Involving Patients in Service Improvement. Nursing Management. 2010:16;10;16-19.
Partnerships and collaborative relationships
London School of Hygiene and Tropical Medicine
We work in partnership with Dr Cicely Marston and Dr Alicia Renedo from the London School of Hygiene and Tropical Medicine (LSHTM). They are conducting a sociological investigation of patient and public involvement (PPI) in the context of our programme: what works, why and how? Their research is ethnographic and uses different qualitative methods (narrative interviews, observation, focus groups, and documentary analysis) to focus on socio-psychological, spatial and organisational dimensions of PPI.
The research shows that relationships between healthcare professionals and patients and the wider social context can enable or constrain effective and inclusive patient engagement. Healthcare professionals disagree about what patient engagement is and what role public participants play. These disagreements affect their interactions with patients, and influence the participant identities patients develop, affecting how they participate.
Certain aspects of the CLAHRC programme, however, allow patients to engage with healthcare quality improvement and collaborate with healthcare professionals, with personal relationships and quality improvement methods both crucial in engendering public trust and participation in healthcare improvement.
Spatial aspects of participation (e.g. times and places of participation) also shape participants' attempts to influence healthcare, and some experienced patients draw on external resources and relationships to make participatory spaces more productive and collaborative.
MARSTON, C., RENEDO, A., MCGOWAN, C. R. & PORTELA, A. 2013. Effects of community participation on improving uptake of skilled care for maternal and newborn health: a systematic review. PLoS One, 8, e55012.
RENEDO, A. & MARSTON, C. 2011. Healthcare professionals' representations of ‘patient and public involvement' and creation of ‘public participant' identities: Implications for the development of inclusive and bottom-up community participation initiatives. Journal of Community & Applied Social Psychology, 21, 268-280.
Imperial NIHR Biomedical Research Centre (BRC)
We have developed a useful working relationship focused on patient and public involvement with the BRC and hosted a secondment for their research officer from July 2012 to February 2013.This secondment has supported:
- The NIHR Imperial Public Showcase Event 2012, on 01/11/2012, attended by a large range of people, including healthcare professionals, members of the general public and students from a local school. It was designed to highlight the wide range of research being undertaken at Imperial BRC.
- A literature review into patient and public involvement that can be shared with other parties interested in increasing the level of PPI in healthcare
- Work is currently underway to create a video to show the impact of being involved in research for patients
ENGAGE are our principle partners for widening our circle of involvement and reach into Northwest London. ENGAGE is a community interest company that works with public sector organisations, local communities and services users, to facilitate engagement which will enable more effective, responsive and sustainable services. They promote and understand that an asset based approach to engagement will build healthier, happier and more connected neighbourhoods and communities. Their work over the last 5 years has focused primarily in areas of greater social deprivation to tackle health inequalities. We see our relationship with ENGAGE as mutually beneficial by developing and enhancing relationships to improve the quality and relevance of healthcare research and by supporting local people to develop research knowledge and skills.
For more information visit: http://www.communitychampionsuk.org
The King's Fund
Our partnership with the King's Fund is facilitated by Jocelyn Cornwell, Director of The Point of Care Programme. She holds an honorary chair in PPI at Imperial College and is an expert strategic advisor to the PPI theme. She is a trustee of the Picker Institute Europe, and has published widely on patient experience and compassion and care, having previously worked as the director of policy and deputy chief executive at the Commission for Health Improvement and on the board of trustees at Connect UK, a user-led charity working with people with aphasia, along with other work in public health, such as serving as a panel member on a public inquiry into a c difficile outbreak in Northern Ireland.
InHealth Associates and the Centre for Patient Leadership
We worked in partnership with InHealth Associates to pilot a programme of learning called "The Effective Patient and Community Representative". The aim of the programme was to start from the perspective of the person who is committed to making a difference in healthcare and wants to be more influential. The programme attracted a diverse range of participants from foundation trust governors, local involvement network members, to volunteers. Learning focused on personal motivation, influencing skills, managing energy and the context of healthcare. Action learning sets proved a popular and effective way to develop and rehearse communication skills and to learn to pose questions that can support people to unlock difficult situations and topics. We ran five programmes with over 40 participants. Three participants have gone on to participate in the NIHR CLAHRC for Northwest London Fellowship Programme. We continue to explore opportunities for learning with the Centre for Patient Leadership.
If you would like to know more about "The Effective Patient and Community Representative Programme" please contact Rachel Matthews email@example.com
Public Service Works
Public Service Works are committed to working with leaders and communities to explore how the basic values of public service can form the core of innovative and transformative collaborations. With support from Public Service Works we have been able to test "Open Space Technology" as a technique to engage people, which has proved beneficial in changing attitudes towards participation. We held two open space events which have indicated there is an appetite for greater collaboration and an interest in co-production in Northwest London. Three PPI Leads in the sector completed open space training with Public Service Works in October 2012 and recently facilitated an event at West Middlesex University Hospital NHS Trust. Public Service works also facilitated workshops on quality accounts, co-production and the PPI Theme.
Local Involvement Networks
Local Involvement Networks (LINKs) are a valued support for our programme by helping us to understand local issues better. A representative from LINks is a member of our partnership forum and we anticipate building on our existing relationships as LINks make the transition to Healthwatch.
We have collaborated with the Sickle Cell Disease Society and with Diabetes UK and are in partnership with ENGAGE London and anticipate increasing our relationships with this sector in the future.