Patient and Public Involvement (PPI) - CLAHRC Community e-newsletter Issue 85

Published Date: 26 Jul 2019

Welcome to the community e-newsletter for the NIHR CLAHRCs, bringing you news from across the thirteen collaborations and the health services research community.



NATIONAL: On 11th July, the NIHR announced a £135 million investment in 15 new NIHR Applied Research Collaborations (ARCs), to continue the support of applied health and care research that responds to, and meets, the needs of local populations and local health and care systems. Patients, carers and the public were a key part of the application and decision-making process for these new partnerships. The NIHR ARCs will replace the CLAHRCs in October 2019.

East of England: Open to applications - our Capacity Building Funding Call and Research / Implementation Fellowships for health and social care practitioners and researchers in EoE. 
Greater Manchester: 
Dr Sarah Knowles discussing 5 Top Tips for Successful PPI - WATCH NOW
PenCLAHRC: Read our hit blog about the importance of reciprocity in Patient and Public Involvement: Collaboration in research: reflections on reciprocity

CLAHRC Yorkshire and Humber 
Public Involvement Training Course for Service Users and Carers
An introductory training course has been developed with service users in the DIAMONDs programme, which seeks to improve diabetes care in people with severe mental illness. The two-day course was designed to offer an enjoyable and informative introduction to public involvement in research. It aims to describe the research cycle and ways in which members of the public can contribute, and thus increase the knowledge, skills and confidence to encourage people to become involved.
It has since been delivered across YH, on behalf of the regional VOICES network, which represents public involvement in the regional NIHR infrastructure and the Academic Health Science Network.
In 2018 we completed a co-produced evaluation of the training, with members of the University of Huddersfield Public Partnership Group. This showed that the course increased knowledge, skills and confidence. The team are now discussing how to adapt the training for researchers and health professionals.
Contact: Dr Christine Smith, Public Involvement Lead

The Community Ageing Research (CARE 75+) study model of public engagement, the Frailty Oversight Group (FOG)
We know that it is very hard to recruit older people into research studies. NIHR CLAHRC YH Frailty Theme has developed the Community Ageing Research 75+ (CARE 75+) cohort study to increase participation of older people with frailty into clinical research and now includes over 1200 older people.
The study requires oversight and public engagement for the duration of both the observational study and individual sub-studies. This work is underpinned by the Frailty Oversight Group (FOG) lay members’ contributions. FOG provides monitoring and governance of the observational study and input into the direction of the CARE cohort. This includes the range and scope of future studies which will use the cohort as well as facilitating networking with more specialised user groups e.g. care home residents, Black, Minority and Ethnic (BME) groups, and dementia service users and their families.
The CARE75+ team have published an article and produced local newsletters (found here).
Contact: Dr Lesley Brown


CLAHRC West Midlands

CLAHRC WM shares experiences of involving the public in research with colleagues ‘Down Under’
Magdalena Skrybant, CLAHRC WM’s PPI Lead, visited colleagues in Melbourne, Australia, in June 2019 to share knowledge/experiences and resources on involving the public in research. The visit was sponsored by the Warwick-Monash Alliance, a partnership between Warwick and Monash Universities.
Magdalena visited colleagues at the Monash and Monash Partners AHSC. The visit included:

  • Presentations delivered by Magdalena Skrybant, sharing experiences of involving the public in research in CLAHRC WM throughout the research cycle;
  • A panel discussion, including public contributors and researchers from Melbourne, highlighting the importance of public involvement;
  • Interactive workshops to develop strategies and resources for meaningful public involvement.

A range of resources for researchers and public contributors developed during the visit will be available to researchers/public contributors at both institutions and will contribute to a national programme in PPI in Australia.
Contact: Magdalena Skrybant,

CLAHRC WM joins regional NIHR Centres to build capacity in PPI
CLAHRC WM has worked closely with PPI Leads from Birmingham Biomedical Research CentreSurgical Reconstruction and Microbiology Research Centre and the PPI Lead from its host Trust, University Hospitals Birmingham, to develop a series of Workshops for researchers/public contributors. These include:

  • Introduction to Public Involvement
  • Setting up a PPI Group

Materials and resources for the workshops draw on the experiences and knowledge of Public Involvement Leads. Moving forwards, Workshops will be co-delivered with public contributors, who bring their personal experiences of public involvement to the Workshops’ design and delivery.
The Workshops complement regular drop-in sessions, which are facilitated by PPI Leads from NIHR Centres. There are 2 drop-in sessions each month, taking place in both Trust and University settings. The sessions provide support to researchers wanting to involve the public at any stage of the research cycle.
Contact: Magdalena Skrybant,

Power to the (young) people
Healthy childhoods are going to be one of the five research themes for the new NIHR Applied Research Collaboration West (ARC West).
This is good news for the Generation R Young People’s Advisory Group (YPAG) based in Bristol as it guarantees ongoing support for the next five years.
The group is made up of young people aged between 10 and 18 and offers an opportunity for young people to critically evaluate the way research about them takes place. For researchers, it’s a chance to have their research ideas, information sheets or questionnaires checked by the people who they are planning to research. The group meets in central Bristol six times a year, providing an opportunity for up to four researchers to use their services each time. 
Read more

Training and resources for sharing power in co-produced research
At CLAHRC West, we want to help everyone share power more effectively when working together on health and social care research.
Co-producing research is when researchers, practitioners and members of the public collaborate to develop research. Everyone works together in more equal partnerships and shares responsibility and power throughout the research project.
Yet sharing power is challenging. There are many factors that affect how we work together, such as hierarchies in universities and the NHS as well as wider social and economic inequalities.
Our new project to develop training and resources for sharing power in co-produced research is bringing together public contributors (members of the public who have been involved in research), practitioners and researchers to share insights from their own experiences
Read more

“What can I do that will most help researchers?”
A member of our Peninsula Public Involvement Group (PenPIG), Andrea Shelley, has co-authored a research paper, ‘What can I do that will most help researchers?’ A different approach to training the public at the start of their involvement,’ as a result of the training programme that she helped to develop. The training focuses on the skill of involvement; active listening and selecting personal experience with the greatest relevance to share with researchers. Andrea found that it is was important that the training should be a ‘two way process’ and said, ‘Researchers need to understand how to ask the right questions and be open to outcomes, to have conversations without undermining the patient experience.’ Identifying the skills for both parties to be able to communicate effectively was a key aspect of the programme.
Read more

Supporting researchers in collaborating with the public
PenCLAHRC’s Patient and Public Involvement (PPI) team helps researchers to collaborate with the public on research. They are active in taking research teams out into the community to work with groups in spaces like children’s centres, community centres, pubs and coffee shops.
A number of current research projects involve parents of young children in systematic reviews; the Parent-to-Parent Support Interventions for Parents of Babies Cared for in a Neonatal unit (PaReNt) Project explores the role of peer-support when babies are in a neonatal unit, resulting in a state-of-the-evidence summary and informing neonatal practice, while APPEAL (Antenatal Preventative Pelvic floor Exercises and Localisation) brings together a programme of research to prevent urinary incontinence. The team meets regularly with parents in community spaces where they help to inform all aspects of the reviews, often with their children, which makes research meetings much more fun!
Read more

Research cycle workshops for Public Contributors.
Working with the two BRCs in Oxford the CLAHRC has developed a programme of workshops for our involved public and potential new recruits. Each month a researcher has led an interactive programme exploring a different element of the research cycle and the contribution PPI can make to it, for up to 30 delegates.
Read more 

Supporting researchers so that their PPI is high impact
CLAHRC Oxford fully expects that each of its funded projects will have PPI within it in a meaningful way, but they also understand that for many staff this is still a comparatively new field and they need support to make this real. So we have developed a range of options to assist different phases of the process and different needs. Chief amongst this support is the recruitment of a virtual list of PPI Contributors, currently numbering 170, who are all ready to be contacted and get involved with individual projects. A range of resources, face to face training and individual advice sessions all back up this tailored support package to enable researchers to develop PPI throughout their work in such a way that it is a positive experience for them and their work, as well as the public they involve.
Read more

CLAHRC North West Coast
Service users help design service evaluation
A service evaluation of CLAHRC NWC Partner Mersey Care’s Life Rooms initiative ensured service users were involved at every stage of the evaluation, including project design, data collection and dissemination of findings.
Alan Price, a service user and Public Adviser with CLAHRC NWC, outlined his involvement. “There has been so much learning for the service through this exercise. Sharing experiences was a valuable mechanism, you can’t always do that in hospital”, he said.
“My confidence has been boosted. I thought at first I’d be a token person but I wasn’t, I decided with the team what the questions should be as part of this evaluation and was part of the evaluation all the way through.”
Watch a video of Alan outlining his experience on the CLAHRC NWC Youtube channel.
Read more

Roy helps puts Dementia Action Week under the spotlight
During Dementia Action Week (DAW) in May 2019 CLAHRC NWC produced in-house a series of five videos featuring public advisers, and hosted them on its Youtube channel.
Broadcast via Twitter, the short clips feature research managed by CLAHRC NWC Research Manager Dr Clarissa Giebel.  Public advisers discuss their role in the research and a personal insight into the condition is given from Roy, whose story develops over three of the videos as he discusses his “vendetta” against the condition and the hope he retains for a cure.
“The aim of the study is to better understand the socioeconomic predictors of accessing and using formal dementia care services (such as paid carers, support groups, clinical support, and transport) after a dementia diagnosis is made, and to understand the experiences of people from advantaged and disadvantaged backgrounds”, said Dr Giebel.

CLAHRC North Thames
Developing young commissioners
The “Young Commissioner” model – which sees children and young people work with funders and planners of local services to ensure they meet the needs of their age group – is gaining traction among local authorities and the NHS.
CLAHRC North Thames researchers based at the University of East London have trained supporting staff and young people based at Dudley Council, West Midlands to establish and embed the Young Commissioner model in their Integrated Commissioning Hub. This follows our previous work with a cohort of young people in East London to improve diabetes services, which featured as best practice in an NHS “How to” Guide
To share the learning about successfully involving young people in designing health services, a series of webinars are planned.
Contact: Dr Darren Sharpe

CLAHRC Greater Manchester 
Why public involvement is important in postgraduate research and how you could do it - Amy Mathieson & Nia Coupe
As researchers, we’ve all heard of PPI (patient and public involvement that is, not the nuisance phone calls) and know how important it is.  However, whilst it is generally accepted that PPI improves the quality of research, there is some confusion over what it looks like, how to do it, and what impact it actually has.  Furthermore, there is little guidance on how to do public involvement in Postgraduate Research (PGR), and arguably less expectation for PGR students to do it.
Read more

CLAHRC East of England 
Supporting LGBTQ Young People In Care: co-devising research-led training materials for multi-professional practice
The SpeakOut study was the first study in England to investigate the experiences of Lesbian, Gay, Bisexual, Trans and Questioning (LGBTQ) young people in care.
UEA researchers worked with six young LGBTQ care leavers to co-produce training materials for professionals. The team looked at available training materials and interviewed managers in local agencies to find out their needs. Training materials were developed, including a film made with the young researchers. The training was trialled across partner agencies.
The SpeakOut film was launched at Norwich Pride in 2018 and is being used by agencies nationally and internationally. The research team has presented the research at the Involve conference in 2018 and the All Party Parliamentary Group on Children in Care and Care Leavers at Westminster in 2019.
Contact: Dr Jeanette Cossar

PPI Reflections in the CLAHRC East of England
Several of our PPI projects have recently published papers reflecting on PPI.
For the PIPPIN (Patients as Partners to Improve Long Term Conditions Services) project, a first time PPI co-researcher Sue Marks led on writing a paper about her experience of being involved on a renal research study.  By sharing her experiences, she hopes to encourage others to become a co-researcher and encourage researchers to reflect on the needs of those undertaking the role. She felt it was a rewarding role but also demanding and requiring a large time commitment.
The PPI Feedback Project used the six National Standards for Public Involvement as a useful framework for reflection of successes and challenges (paper). 
Finally, the IMPRESS project has examined PPI within the CLAHRC East of England, recently publishing the paper “We’re passengers sailing in the same ship, but we have our own berths to sleep in”.

CLAHRC East Midlands 
Community Partners Panel - looking for members
The Centre for Black and Minority Ethnic Health is a programme of CLAHRC East Midlands (CLAHRC EM). The involvement and engagement of the community is critical to enable the Centre to achieve the vision ‘to reduce ethnic health inequalities’. The Centre has developed a Community Partners Panel to further enhance CLAHRC EM’s Patient and Public Involvement (PPI) activities.
The purpose of the Community Partners Panel is to create and develop a multi-disciplinary team to advice, guide and participate in assigned health and social care research activities. The Centre is looking for members to join the Community Partners Panel. Members will be recruited from the diverse patient, public and partner communities.
Find out more or complete the expression of interest form to become a member. 
You don’t need to know about research before you volunteer!

Raising awareness of prostate cancer
African and African Caribbean men are more likely to develop prostate cancer at a younger age.
The ‘Play Domino Talk Prostate’ campaign raises awareness with African and African Caribbean men of their increased risk of prostate cancer through the cultural game of dominoes. Launched in March 2018, this was very effective collaboration between the Centre for BME Health, Prostate Cancer UK and ProstAID, which was supported by CLAHRC East Midlands.
Since then, the Centre has ran weekly group sessions to meet regularly, play dominoes and talk informally about prostate cancer. The participants also contributed to the development of the toolkit, to assist other community champions and organisations on how to raise awareness of prostate cancer among African and African Caribbean men.
Those individuals who would not normally engage are now engaging and feel empowered, as a result of this campaign, and are acting as ambassadors.
Read more