Patient and Public Involvement

Welcome to the community e-newsletter for the National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) bringing you the latest news and interesting developments from across the thirteen collaborations and the health service research community. The NIHR CLAHRCs are funded by the NIHR and form part of the NIHR infrastructure. This newsletter looks at the work NIHR CLAHRCs are doing around  Patient and Public Involvement. 

Find out more about the CLAHRC Partnership Programme at

 Celebrating stroke month through blogs by carers of stroke survivors 
During the month of May, the Stroke Association raises awareness of the impact of stroke, and shares information and advice on how to help prevent the condition across the country. As a partner of the Stroke Association, the NIHR CLAHRC Greater Manchester took part in stroke month by asking carers who are members of their research user group to blog about the impact that stroke has on them as individuals and about their experience of contributing to the Organising Support for Carers of Stroke Survivors (OSCARSS) research study. They responded with a range of moving and creative pieces: Read the blogs.


NIHR CLAHRC South West Peninsula (PenCLAHRC) addresses PPI questions
All science starts with a question: How can we increase treatment compliance in diabetic adolescents? How effective is a diet intervention in reducing obesity? How can we reduce smoking in low-income households? To people outside of health research these questions can sometimes sound like ‘What is the best way of stopping feckless people costing the world?’ Rather than enabling science, these questions can alienate the very people they are meant to benefit. Via PenPIG PenCLAHRC addresses other questions: Does this “plain English summary” use plain English? Will this consent form result in informed consent? Does this community-based intervention chime with the community’s perspective? We are also working on our own questions: What is the role of facilitation in PPI? What is the impact from PPI on the people engaged in the conversation? How can we produce knowledge about involvement that helps us develop even stronger and more fruitful collaborations? More here.

Working with the Bristol Somali community to improve outcomes for children with autism
Studies have found that children whose parents have migrated from Somalia to western countries, including the UK, may be at greater risk of developing autism than children from other groups. Autism is a condition that affects social interaction, communication and behaviour.

NIHR CLAHRC West worked closely with people from the Somali community on a project to find out about the experiences of Somali families, living in Bristol, who have a child with autism and to understand how autism is understood in their community, and how health and social care services can be best delivered to support them.

NIHR CLAHRC West worked in partnership with Autism Independence, a community based group led by Nura Aabe that supports members of the Somali community who are affected by autism. Nura led negotiations and provided ‘cultural brokerage’.  Find out more about this project.

Bringing patient perspective to Embedded Research
The Embedded Researcher model sees researchers “immersed” within an organisation; producing research tailored to organisational needs, and driving translation of findings into improved practice. The Embedded Research Team (ERT) is an interdisciplinary team of NIHR CLAHRC North Thames researchers, funded by University College London Hospitals NHS Trust. It works with staff and management to develop, implement and evaluate research to tackle challenges facing a hospital trust. The ERT’s Patient and Public Involvement Panel was recruited to advise on Team research. It consists of seven patient representatives and one member self-identifying as a carer representative. In addition to providing ongoing advice the Panel sends a representative to ERT steering group meetings. The Panel has advised on the scoring model and process evaluation of a Ward Accreditation Programme; an appraisal of “nursing specials” providing one-to-one care to patients and an analysis of crowding in the emergency department.

PPI and NIHR CLAHRC East Midlands (EM)
NIHR CLAHRC East Midlands provides a wide range of opportunities for stakeholder engagement and participation across all of its structures, themes and projects. Our Public Involvement (PI) Programme enables intended end-users of research to shape its selection, design, delivery, dissemination and implementation. To this end, we pro-actively involve patients as co-producers of research and implementation to ensure that studies are relevant to the people who use services, outcome measures are easily understood by patients, how people are recruited to studies is effective (particularly in under-represented communities), research findings are understandable by patients and distributed widely and research evidence is used to improve peoples’ lives as quickly as possible.

The NIHR  CLAHRC EM Public Involvement web pages provide more information, and house resources including our four year Public Involvement Strategy which sets out our vision, strategic aims and details of how we will deliver our strategy, an evidence BITE outlining an accredited training programme that equips lay people to be active members of research teams, as well as a link to the Patient and Public Involvement and Engagement (PPIE) section of the NIHR annual reports plus more. NIHR CLAHRC East Midlands also engages with the wider public across the region. This takes many forms including the production of leaflets and posters targeted at a general audience, organising open information-sharing events and the use of social, print and broadcast media to promote NIHR CLAHRC East Midlands activities and achievements.

Mechanisms to facilitate public influence in research programmes in NIHR CLAHRC North West Coast (NWC)
Working alongside members of the public in the North West, NIHRC CLAHRC NWC aims to reduce health inequalities and improve health. These mechanisms have been put in place to lead to a step change in the way the public influence our overall research programme.
A public engagement policy, co-created with members of the public (public advisers) sets out advisers roles in the governance of  NIHR CLAHRC NWC which includes them holding formal positions on the management team, steering board and sub-committee (responsible for approving research proposals). Public advisers working on research projects or other CLAHRC activities become automatic members of the public reference panel; which alongside the public engagement facilitator has strategic oversight for public engagement in the collaboration. The public reference panel provides a collective voice for members of the public in CLAHRC NWC which is developing into a group with a strong sense of democracy and control.
A Community Research and Engagement Network, (COREN) will also recruit around 100 residents across 10 ‘Neighbourhoods for Learning’ as CLAHRC NWC Champions. Alongside other stakeholders, the champions will oversee the design and implementation of local resilience initiatives in their neighbourhoods and be involved in designing and conducting local evaluations.

The Health Inequalities Assessment Toolkit (HIAT) was created to help support teams through the process of developing research proposals for funding from CLAHRC NWC. At every stage of drawing up the proposal the user is guided to question whether appropriate and adequate public involvement is in place and whether activities have the potential to contribute to reducing health inequalities. The sub-committee only considers proposals that have used the HIAT process.

Co-production in NIHR CLAHRC East Midlands (EM): Public Involvement in practice
The NIHR CLAHRC EM Helping Urgent Care Users Cope with Distress about Physical Complaints study is testing the effectiveness of a Cognitive Behavioural Therapy (CBT) delivered via telephone or video calling for people with high health anxiety that have had two or more unscheduled or urgent care attendances in the previous 12 months. The study team includes two Public Involvement representatives, David Waldram and Fred Higton, whose contributions have been integral to the development and monitoring of the study.
Dave and Fred have been active team members, having made important contributions in terms of shaping the study design, attending study meetings, reviewing and contributing to study documents, presenting at meetings/conferences, testing of technology and, in the case of cartoonist Fed, event creating images for study documents and websites.

Post-operative urinary retention project came out of patient’s research idea
NIHR CLAHRC West’s project on preventing post-operative urinary retention (PO-UR) was the brainchild of public contributor Nick Leggett, who put the idea forward as part of our open call for research ideas.
As a patient, Nick had experienced post-operative acute urinary retention, requiring catheterisation. So Nick investigated some of the research literature on PO-UR. Through discussion with clinicians treating him, based on his investigation, he was able to avoid urinary retention following further procedures. He hypothesised that it should be possible to come up with criteria to identify people who are at risk of PO-UR, and another set of criteria to reduce the risk of these people developing urinary retention following surgery. Nick has stayed closely involved in all stages of the project, taking on an honorary research associate contract at University of Bristol. Read more about Nick’s involvement in this project.

Making research documents clear and concise
In order to ensure research materials are clear, accessible and concise NIHR CLAHRC North Thames has recruited members of the public to its virtual document review panel. As well as consent forms, patient information sheets and recruitment materials, the Panel has reviewed surveys and questionnaires and “lay” summaries of projects. It operates via email, allowing those who might find it difficult to attend meetings and events to contribute to our work. The Panel review materials to ensure they are in “Plain English” and they address questions someone approached to participate in our work is likely to ask – what participation will look like, how personal information is stored and who is funding the work. Feedback from CLAHRC researchers has been positive describing the panel as “incredibly helpful” and that it “really helped in simplifying the language used to make it more understandable.” For more info contact Steven Towndrow

NIHR CLAHRC South West Peninsula (PenCLAHRC) celebrates the role of PenPIG
PPI has been central to how PenCLAHRC operates, which is why it was one of the first CLAHRCs to establish a ‘purpose-built’ PPI forum – the Peninsula Patient and Public Involvement Group (PenPIG). Made up of members of the public, service users and carers, for the past 10 years PenPIG has played a vital role in the wide-ranging activities related to the running and work of PenCLAHRC. PenPIG has representation on PenCLAHRC’s Management Board and on the stakeholder group which prioritises research projects. Find out more here.

Hitting the Public Involvement high notes: SOPRANO study
Whether standardised needs assessments for gaining an understanding of older people’s health and social needs in the community lead to better decision-making and signposting for support and care from third sector or other integrated services. The ultimate aim is to enable people to self-manage their health needs and maintain independence in the community.
On the subject of public involvement, Dr Gina Sands, Research Fellow on the SOPRANO study says: “We have been lucky to have a great external and public advisory group which meet regularly to contribute their knowledge and experience to the SOPRANO project”.
“Some of the most valuable input of the advisory group has been in designing our interview schedule to use with commissioners, third sector organisations, and older people. The advisory group highlighted where some of the language was overly complex or if the meaning of certain questions might be misconstrued by our participants. They also suggested new lines of enquiry which was very helpful to ensure we gain the most useful information in our interviews”.
“Our advisory group is quite diverse and consists of members of the public, representatives from the third sector, commissioners, health care professionals, and academics. We always welcome new interested members so please get in touch if you would like to help us with our research”. 

NIHR CLAHRC North West London’s (NWL) Exchange Network
The Exchange Network is how we build productive relationships, capacity and capability for involvement. The NIHR at 10 celebrations held on the 18th May should leave no doubt that patients and the public are central to the design and delivery of high quality research. Co-designing personal development opportunities with them is an important and rewarding aspect for NIHR CLAHRC NWL. The Exchange Network is a novel mechanism established with patient advisers that has evolved since 2013.The network provides regular opportunities for dialogue and learning about research, improvement and involvement. It is a growing pool of 54 members, including patients, carers, researchers, NHS managers and clinicians. We co-design and co-facilitate four meetings a year with a regular attendance of 15-25 people.  It is designed and delivered in partnership with Mark Doughty (HSJ Patient Leader). Cherelle Augustine, a member since the design stage reports her personal reflections about this opportunity. For more: For more information, contact Rachel Matthews: 07889 179 034

Participatory research in East London     
An NIHR CLAHRC North Thames study aims to explore social and cultural factors influencing feeding practices in the Bangladeshi community of Tower Hamlets, East London. The study followed a prioritisation exercise in which the community identified child obesity as a key issue. Nurture Early for Optimal Nutrition (NEON) is a partnership; three community members were trained in qualitative interview techniques and supported to lead study recruitment. The Community Facilitators explore perceptions of barriers to optimal feeding practices in focus groups and interviews with family members and community influencers, and are involved in engagement activities acting as project champions.
Identified practices and beliefs towards complementary feeding will inform the “reverse innovation” of a female, volunteer-led, Participatory Learning and Action women’s group model. The model will be adapted from low-resource settings in South Asia to East London, with the aim to promote healthy feeding practices amongst Bangladeshi children.
For more information, contact Dr Lorna Benton or Prof Monica Lakhanpaul

Researchers work with patients to co-produce Quality Indicators for use in Primary Care
, the NIHR embraces principles of co-production. Characteristics of co-production encourage collaboration and underline the value of people’s expertise through experience. Researchers in CLAHRC West Midlands worked in partnership with patients of a Research User Group (RUG) at Keele University to co-produce a set of self-reported Quality Indicators (QIs) for osteoarthritis in primary care (appointments with the GP or practice nurse).

Patients with osteoarthritis should receive the best care and support and should be provided with the right information to help them manage their condition. Information about the quality of care patients with osteoarthritis receive is not routinely collected. QIs can benefit patients by measuring whether minimum standards of care are met and ensuring patients are offered best care.

The research had two stages: 1) co-development of QIs for use in primary care in the UK, and 2) comparing the UK QIs with QIs developed in Norway. RUG members and researchers produced 15 QIs and RUG members ensured the wording of a questionnaire to assess the QIs was appropriate.

The 15-item QI questionnaire has been used successfully in the MOSAICS study, which developed and evaluated a new model of supported self-management of OA to implement the NICE quality standards for OA. Having QIs helps to ensure that patients osteoarthritis receive high-quality care and includes elements of care that patients consider to be important.  Find out more..

NIHR CLAHRC South West Peninsula (PenCLAHRC) PPI on film
PenCLAHRC has produced a film on the work of the Peninsula Patient and Public Involvement Group (PenPIG) with a focus on how the group helped and advised the INTERPRESS research project. INTERPRESS is examining the difference in blood pressure which some people experience in each arm. It is establishing the health implications for people with an inter-arm difference in blood pressure and identifying what might be a ‘safe’ level. PenPIG helped in explaining the project to a general audience and investigating ways in which the results could be disseminated. View the film here.

Residents Research-Active in Care Homes (RReACH)
Care homes are increasingly the focus for health research.  They are an important part of the picture of health and care provision for older people with high levels of needs and complex comorbidities.  People living in care homes have important and very particular experiences and therefore unique ‘Patient and Public’ perspectives to bring to research with their involvement.  The Residents Research-Active in Care Homes (RReACH) project, funded by NIHR CLAHRC East of England, aimed to find out if people living in care homes are interested to contribute to research as collaborators.   If so, what are the best ways to involve them in research and what support might they need?  The study had a co-production ethos, and raised interesting issues of negotiating agendas and moving between specific and shared concerns.  The study found that there are residents with a clear interest in taking Patient and Public Involvement roles, and produced guidance for researchers and research partners.  The guidance is available on the ENRICH website (Enabling Research in Care Homes).  Further information about the study is available on the CLAHRC EoE website (Study summary: Understanding PPI in Older People’s Research;  Blogs: RReACH workshop;  RReACH Seminar)
Contact: Anne Killett (

PPI Feedback Loop- NIHR CLAHRC East of England (EofE)
A new Patient and Public Involvement (PPI) development grant, funded by NIHR CLAHRC East of England, has just started.  Health researchers are required to have PPI in their projects and ask PPI representatives for comments at various stages of the research cycle.  PPI representatives do not always receive ‘feedback’ from researchers on their comments; for example, were the comments useful, were they used and if not why not?  PPI representatives who do not receive feedback may feel less motivated to contribute in the future and wonder if giving up their time is worthwhile. Researchers may not feel feedback is important, know how to feedback and are also busy with other research activities. This study aims to find out more about this PPI process and ultimately improve PPI. We are working with six PPI organisations over the East of England and a survey has just gone out to both researchers and PPI representatives. Read more information. Contact: Elspeth Mathie or Helena Wythe  Any comments: Twitter @Elspeth_mathie  #PPIfeedbackloop

Setting the agenda for end-of-life research in Greater Manchester (GM)
The NIHR CLAHRC Greater Manchester has been working with local carers and healthcare professionals to shape future research in end-of-life care. Since the end of 2015, the team has been working closely with patients and carers to find out what they see as the important issues when thinking about care at the end-of-life, and in February 2016 it was the turn of healthcare staff to give their views. Ten key priority areas had already been identified through a national piece of work by the Palliative and end of life care Priority Setting Partnership (PeolcPSP), but the CLAHRC team is keen to understand what matters most to family carers and healthcare professionals at a local level. Read more.

Engagement and Involvement tools for the NIHR CLAHRC North West Coast (NWC)
A range of multi-media tools led or co-produced by the public reference panel have been developed to help research teams and members of the public to engage, involve members of the public and work together effectively.

Funding from Research Councils UK is being used to develop a resource to introduce young people to the concept of research using the topic of health inequalities. A snakes and ladders game is being coproduced with young people in the North West. When finalised, the giant walk-on and board game versions will be available to use by selected schools in the North West and CLAHRC teams nationally. Other engagement resources have been developed such as a North West health inequalities quiz and other interactive engagement tools to encourage public participation. The resources (including the game) were used recently when over 30 shoppers visited a “Pop-up Neighbourhood”,  organised by NIHR CLAHRC NWC to find out about what surprising factors can impact on the health of a community. The day was part of Lancaster University’s Campus in the City annual spring event.

The public reference panel have led the development of ‘Be Involved’ resources aimed at both directly supporting public advisers in their role and also CLAHRC NWC teams to work effectively with advisers. The tools include an induction checklist, welcome pack, adviser profiles and films about why public involvement in health inequalities research is important and what’s involved in being a public adviser. The panel are trialling a new ‘Focus on…’ workshop series format in which they invite individuals to lead a session on an NIHR CLAHRC NWC topic of their choice. The group increase their understanding of the topic and put together a film about the topic, sharing this learning in plain English with a wider audience.

PPI involvement in polypharmacy project
A team from the NIHR CLAHRC South West Peninsula (PenCLAHRC ) are investigating a new model for prescribing to patients with multiple conditions and who are prescribed a range of medication. The aim of the project is to create a structure within which clinical judgment can be used to support individually-tailored prescribing, a process which involves everyone in the decision-making spectrum including patients. Find out more here.

Creative, participative approaches with young people leaving child and adolescent mental health services. 
Finding innovative, engaging, meaningful ways to involve children and young people (YP) in research is an ongoing quest. NIHR CLAHRC East of England  researchers adopted participatory, creative approaches with young service users to i) explore the preparation needs of YP leaving child and adolescent mental health services (CAMHS) and ii) co-devise a CAMHS Transition Preparation Programme, deliverable in routine NHS mental health settings. Participative approaches facilitate democratic working and learning; creative techniques are particularly suitable to explore sensitive, complex topics with YP.
Eighteen YP in three NHS mental health trusts were actively involved in: two-day exploratory workshops to generate ideas; production workshops to draft a practical CAMHS preparation procedure; and evaluation and planning. YP took on participant/researcher roles: co-hosting workshops for CAMHS and AMHS clinicians to ensure deliver-ability; dissemination; presenting to Trust transition review panels and Boards; co-designing/presenting a poster at a national conference; attending bespoke literature review training; and co-authoring a journal article. Read more information. Contact: Valerie Dunn   unsubscribe from this list | update subscription preferences

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