NIHR CLAHRC Newsletter – Focus on PPI

Find out more about the CLAHRC Partnership Programme at<>.

Working with stroke survivors and carers to promote post-stroke services NIHR CLAHRC Greater Manchester (GM) is working to support recovery and reduce social isolation for people affected by stroke by developing and evaluating an online self-management tool for stroke survivors and their carers. During September, supported by the Stroke Association<>, NIHR CLAHRC GM is running three focus groups with stroke survivors and one with carers from across Greater Manchester. The focus groups aim to gain a better understanding of the types of community resources, services and activities sought by stroke survivors and their carers following a stroke and the role these play in their life after stroke. Working in partnership with patients and carers, the focus group findings will then be used to develop “PLANS for Stroke” (similar to<>), an online self-management tool designed to provide stroke survivors and carers with information, personalised and tailored to their needs and preferences, about locally available community support services and activities. Find out more<>.

Raising the issue of obesity with the South Asian community in Birmingham Despite being at higher risk for chronic disorders, the South Asian population remains largely under-represented by clinical or applied health research and service redesign. Given the prevalence and consequences of obesity and being overweight in this population and the lack of evidence on how to raise this issue generally, NIHR CLAHRC West Midlands (WM) has been working with South Asian Patient and Public Involvement (PPI) representatives to develop interventions to address obesity and being overweight among the South Asian population and to improve services which will be best suited to this community.  Findings from this PPI activity, recently published in the British Journal of General Practice<>, highlighted the importance of cultural sensitivity in starting conversations about weight between patients and their GPs. It is very important to think of creative strategies for involvement of under-represented groups because these groups are not necessarily ‘hard to reach’ or difficult to engage, but rather the approaches and methods used need to be culturally sensitive, inclusive and appropriate.

PenCLAHRC supports BMJ on use of PPI

The British Medical Journal recently ran an editorial on how it intends to strengthen PPI in the running of the journal. The PPI team at NIHR CLAHRC South West Peninsula (PenCLAHRC) gave their support to this approach and argued that it needs to be complimented by the promotion of meaningful PPI in the production of research. Their thoughts were published in a letter in the BMJ which can be read here<>

NIHR CLAHRC North Thames evolving involvement At NIHR CLAHRC North Thames<> (NT) patients and the public are already making a big contribution to our research.  However we are putting structures in place to make involvement more systematic and embedded in what we do. This will make our involvement activity more consistent and make reporting, and measuring impact much more straightforward. We are setting up a Research Advisory Panel of laypeople to guide us on how we involve and monitor how we are doing – holding us to the pledges set out in our involvement and engagement strategies and acting as a sounding board for involvement activities and communication materials about our work. The patient representative on our Collaboration Reference Group of CLAHRC partners will bring patient voice to its work. Our new PPI lead Steven Towndrow<> will give laypeople the tools to do this with confidence, providing the support patients and public need to contribute to meetings, bring real-world perspective to research or deal with professionals as peers. We will equip CLAHRC researchers and PhD students with the skills they need to involve patients and the public in their research, via our capacity and capability arm, the CLAHRC Academy<>.

Evaluating an online alcohol intervention – the DIAMOND Trial This NIHR CLAHRC NT DIAMOND (Digital Alcohol Management On Demand) project<> under our Optimising Behaviour and Engagement with Care<> theme compares different interventions to manage harmful drinking. We’re testing how an alcohol treatment website called Healthy Living for People who Drink (HeLP-Alcohol) compares with face-to-face counselling in community alcohol services in Islington, Camden and Haringey. Three volunteers with lived experience in this area, and varying IT experience and ability were invited to “test-drive” the website before it goes live. Volunteers attended a central location to access the website for three two-hour sessions. Group discussion between volunteers and researchers followed and feedback was reviewed and shared with website designers. Service user suggestions were invaluable, making a big impact on the look and feel of the site, improving navigation (through colour-coding different sections) and adding more information on the health impact of alcohol. Our volunteers reported a positive experience of taking part and were enthusiastic about being involved in further research. Two are now members of the Trial Steering Group as patient representatives. Their perspective will assist us as we evaluate whether web-based treatment is as effective and acceptable as face-to-face treatment.

How do we improve the practice of PPI?

The National Involvement Standards: 4PI1 offers a framework  to support good practice in involvement.  NIHR CLAHRC Northwest London is currently working with its creators to investigate how 4PI can support the implementation of meaningful PPI across our programme. Our interactions with improvement teams working across diverse healthcare sites over the last five years, highlighted that PPI guidance is rarely used in practice. Despite this, healthcare professionals and researchers value more support to help them involve patients effectively, to translate evidence into practice in the NHS. We introduced 4PI in April 2014 and are researching how it is used and adapted by improvement teams to work for them in their local situation.  We predict the use of 4PI can lead to more effective practice and positive impact.  We’ll be testing various adaptations of 4PI to further understand the necessary factors which support how the teams use it. For more information, contact Meerat Kaur –<>.

National Involvement Partnership. National Involvement Standards: 4PI. London, UK; 2013.

Long standing experience of PPI groups in East of England The NIHR CLAHRC East of England (EoE) is very fortunate to be able to draw on a wide range of existing PPI experience, groups, organisations and individual representatives as well as making new PPI connections. Two of the long standing groups in the EoE region are: PPI in Research (PPIRes<>), which is based in Norwich and running since 2003; and the Public Involvement in Research group (PIRg) based at the Centre for Research into Primary and Community Care (CRIPACC<>), University of Hertfordshire since 2005 . Both groups have members with extensive experience of involvement in health research, who are supported through comprehensive training.  Penny Vicary, a lay member of the PPIRes Panel, reflects on her ten years’ experience of research involvement and being a panel member in her blog for the CLAHRC EoE website<>. Heather Maggs, (a PIRg member) took part in INVOLVE’s ‘End of Life Care research methods and public involvement in end of life care research’ webinar earlier on the year, talking openly about her experience as a carer involved in dementia research. Read more<>

Strategic Developments in Yorkshire and Humber We have established a NIHR CLAHRC Yorks and Humber (YH) PPI Working Group to co-ordinate and support best practice in PPI activity both within and across the themes. In addition, there is agreement for PPI to become a formal workstream of joint working between the CLAHRC YH, the Research Design Service  for Yorkshire and The Humber and the Local Comprehensive Research Network. We have a developed a revised PPI Strategy with Barnsley Consumer Research Advisory Group (CRAG) and our PPI working group. We continue to work closely with our CRAG, developing a pool of resources for PPI groups. We have undertaken a joint networking and training session with the telehealth service user group ‘TaCT’. Members of our PPI working group attend the national INVOLVE Patient and  Public Involvement in CLAHRCs (PPIC) meetings and will attend and give presentations at the INVOLVE conference in November. Three new theme specific service user groups have been established since the NIHR CLAHRC YH came into force and these are continuing to develop. We are finalising our Theme reporting template for PPI. We are also determining our evaluation strategy for our PPI activity to include Case histories, qualitative methodology and use of a new tool (PiiAF) through collaboration with PenCLAHRC.

Helping people become involved

One of the major barriers to patient and public involvement is a lack of knowledge and confidence by people who are enthusiastic to become engaged. To help overcome this NIHR CLAHRC East Midlands (EM) developed close links with Northampton University and designed and delivered an innovative course enabling patients and the public to take a more active part in research projects. The course was well received and, apart from an enhanced contribution to PPI activities, it also improved self-esteem in some of the course members.


The PenCLAHRC PPI team are playing active roles in November’s INVOLVE conference. Members of the team will be showcasing: Engager 2<>, a project designed with service user involvement to develop and evaluate a multi-disciplinary approach to supporting  prisoners with mental health problems before, on and after release; The DIAT project (see above) the role of PPI in systematic reviews  and; investigating how public engagement links to public involvement. The PPI team will also be at this year’s Science and Society Conference in Vancouver, where they will present papers on evaluating the quality of PPI in research and an overview of lessons learnt from the first five years of PPI in PenCLAHRC.

PPI recruitment and selection: a method developed by NIHR CLAHRC WM Although there is widespread agreement that it is crucial to involve patients and the public in health and social care research, how well this works in practice depends on how the involvement of patients and public is operationalised. There has been limited research conducted on PPI and there appears to be little consensus on the best approach to ensure that the advantages of meaningful PPI are maximized. The first step has been to recruit PPI advisors to join the four substantive research themes. A formal selection process was developed and has been successful in recruiting 13 advisors, many of whom already have roles in advising on health and social care service developments. On the 28 August a lively induction event took place, providing an opportunity for advisors and researchers to meet one another and the group explored ideas about how advisors can become more engaged in activities. A training event is also being planned for early October. Given NIHR CLAHRC WM’s clear commitment to involve patients and the public in all aspects of management, research and implementation of applied health activities, it provides an opportunity to design, develop and explore PPI processes and, uniquely, to analyse these. A discussion paper is currently being developed by the central team and an in-depth analysis of PPI engagement and its impact on service delivery will be conducted by Alison Hipwell and Lee Gunn, two researchers based at the University of Warwick. To find out more about PPI in CLAHRC West Midlands view our website<> and subscribe to our News Blog<>.

Involvement of carers in acute treatment of patients with psychosis Research shows us that involving family and friends (“carers”) in patients’ mental health care can help with recovery in a number of ways. It may result in fewer hospital admissions, shorter hospital stays and better quality of life reported by patients. However, carers’ involvement often does not occur in everyday clinical practice. This NIHR CLAHRC North Thames research<> aims to find ways of creating a genuine partnership between patients, carers and mental health staff during the stressful and challenging period of a hospital admission for mental health reasons. Our project works directly with carers, patients and staff exploring barriers to involvement in hospital care and developing a programme we can test on the ground. We’ve already run focus groups with patients, carers and staff to better understand issues related to carers’ involvement in hospital care. Next, we’ll recruit a Lived Experience Group of patients and carers to help us set priorities for the research. There will also be opportunities for patients and carers to join the project’s steering group. To find out more about the project contact Ayse Dirik –<> or Domenico Giacco –<> at 020 7540 4380 ext.2331.

PPI and question generation

Many of the projects supported by PenCLAHRC are chosen following a question generation exercise. Questions may come from clinical practitioners, health managers, and the public and patients. From the autumn PenCLAHRC is to roll out a new series of question generation workshops aimed at patients, carers and the public across Devon, Cornwall and Somerset. PenCLAHRC has previously generated 7 public initiated research projects in this way. One project which came about following a question from the public was the Diabetes Intervention for Agenda Trial (DIAT).  More here<>

Developing patient-generated PROMs

Patient-reported outcome measures (PROMs), traditionally developed by researchers, are used routinely to help gauge the effectiveness of treatment and care. The NIHR CLAHRC South London’s (SL) PPI expert team is working with patients and service users who have relevant personal experience to develop new PROMs. Their hypothesis is that patient-generated PROMs are better than researcher-generated PROMs because they reflect the opinions of the individuals whose symptoms and lives are being assessed. The new patient-generated PROMs will be used in some of the research being carried out by the other CLAHRC SL specialist teams. Find out more<>

Perspectives of people affected by cancer being used to maximise high-quality care As part of its work with Macmillan Cancer Support<> to improve the cancer-specific knowledge, awareness and skills of Manchester’s healthcare professionals, NIHR CLAHRC GM has been working to gather information from people directly affected by cancer. The CLAHRC team wanted to know what people who have had a cancer diagnosis in the past five years (and their family members) believed to be the most important aspects of improving cancer care in the community. The opinions and views of focus group participants will help to inform and shape the future of cancer care in the region. CLAHRC GM will submit a report to the Macmillan Cancer Improvement Partnership<> in October 2014 detailing recommendations for meeting the cancer-specific learning and development needs of Manchester’s healthcare professionals, as well as suggested methods and timelines for delivery. The project has been endorsed by each of the NHS Clinical Commissioning Groups in Manchester and provides a real opportunity to evaluate how cancer-specific knowledge and skills could be improved upon to deliver an outstanding level of care across the city. Find out more<>.

Breaking the professionalisation boundary There has been much discussion in the PPI world about the ‘professionalisation’ of PPI representatives. The career of Kath McGuire, one of the PPI research team supported by PenCLAHRC, shows how these distinctions can be transcended in practice. Kath was the carer of a child with long term health problems which led her to become involved in health research. She joined PenPIG (the PenCLAHRC PPI group), undertook academic studies and, this summer, gained a PhD, before joining the PPI team at PenCLAHRC. There’s a video of her story here<>

CLAHRC EoE PPI theme research update

This PPI theme focusses not only on current best practice implementation but also on applied research that defines and develops optimal approaches to PPI in applied health research, implementation science and innovation processes.  The PPI theme has three projects now underway:

*   IMPRESS – Implementing PPI in an NHS Research Programme – CLARHC EoE;

*   PIPPIN – Patients as Partners to improve long term conditions

*   RREACH – Understanding PPI in research with older people living in residential care settings.

Details of the PPI theme and projects can be found here<>.  We are very pleased to announce that Jonathan Boote, Reader in Patient Experience and Public Involvement in CRIPACC at University of Hertfordshire, has joined the CLAHRC EoE. His role will be as co-lead of the PPI theme with Professor Fiona Poland (University of East Anglia). Jonathan joins us from the University of Sheffield, and will be contributing to two out of the three projects as well as adding leadership and a fresh approach to the theme’s work. Jonathan also works with INVOLVE and you can read more about him here<>.

If you would like to contact us for more information about our theme and projects please email<>;<>; or<>

Cardiac patients helped website development Government policy is for 85 percent of people who have had a cardiac event be offered rehabilitation programmes. However  traditional, hospital based services are taken up by only  44 percent of the people who would benefit; which means many people are missing out on key interventions that will improve their quality of life and reduce the risk of future cardiac events. This is for a number of reasons including transport difficulties, time off work and lack of motivation. To meet these challenges Activate Your Heart<> was supported by NIHR CLAHRC EM in collaboration with University Hospitals Leicester, The Health Foundation and NHS Improvement. People who have had a cardiac event provided their valuable insights into the project to reinforce the usability of the website.

CLAHRC EoE – Successful PPI with Young People in the TC17 project – Enduring Disability and Disadvantage Theme (EDD) Val Dunn, Research Associate at the University of Cambridge, talks about her experience of working with young people facing transitions in their care arrangements aged 17 in her blog<>. Her work in the TC17 project focused on the mental health of vulnerable young people leaving Child and Adolescent Mental Health Services (CAMHS). Val and the research team involved the young people in designing an animation project which offered the opportunity to share their experiences, work creatively with a group of professionals, develop self-expression, team-working skills and safely explore sensitive issues. The resulting films My Name is Joe<> and Finding My Way<> are having great impact with over 5,500 views for both on YouTube. Finding my Way was awarded best documentary at the BFI Future Film Awards in 2014 (15-18 age group). My Name is Joe is being used to train foster carers and social workers all over the country and has become part of the Fostering Network’s Skills to Foster training for prospective foster carers.  Best of all is the pride the young people themselves feel in their achievement.  For a ‘Behind the Scenes’ look at these excellent films, see My Name is Joe<> and Finding My Way<>.

Diamonds Programme PPI panel – DIabetes and Mental Health:  Improving Outcomes aND Services Following a successful public consultation event earlier this month, an independent PPI panel is now embedded into the DIAMONDS research programme.  Members will assist the research team to ensure the views and needs of patients with severe mental illness and diabetes and their carers are given due consideration at all stages of the research. The group will meet bi-annually with regular contact via email and post in between time, in order to inform and guide project development.  Further information from<>, on our website<> or follow us on twitter<>!

Getting the Language Right

The Leicester Diabetes Risk Score has been a great success with more than 600,000 people taking it on the Diabetes UK website. With the condition disproportionately impacting on South Asian communities the decision was taken to translate it into a number of other languages and the first was Gujarati. The contribution of Gujarati speakers to the development of the translated Diabetes Risk Score was invaluable and they highlighted where some English terms did not translate directly into their language. They ensured that the language used was clear, understandable and avoided possible misunderstanding and ambiguities.

Further information

Further information on the CLAHRCs, including links to their own web resources, is available at<>. This newsletter is produced by the CLAHRC Partnership Programme based at Universities UK on behalf of the CLAHRC community. If you have any ideas or suggestions for the newsletter please contact<>. For past issues of this newsletter and to join the mailing list please visit!publications/c17jc

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