CLAHRC East Midlands: CLAHRC East Midlands places PPI emphasis in latest funding call
Patient and public involvement (PPI) has been placed at the heart of the bidding process for phase 4 studies by CLAHRC East Midlands. Last spring the organisation announced details of funding opportunities for projects specialising in database studies, systematic reviews and evaluation research for sums of up to £25,000.
A total of 72 applications were made and one of the elements of the application required each proposer to demonstrate how they would involve the patient or public in the study.
The assessment process itself involved four PPI representatives on the assessment panels.
Following assessment 27 were given conditional offers and study protocols will be submitted next month offering a further explanation of the intended proposal.
Vinod Chudasama, Patient & Public Involvement Lead for CLAHRC East Midlands, said: “It’s important to involve patients and, or, the public in research because the outcomes will ultimately have an impact on them. Involvement will give them an understanding of what is being carried out in their name and for CLAHRC this engagement helps to quality assure the work so that members of the public can say, ‘I can trust this because it has been co-created by patients’.”
CLAHRC East of England: Supporting LGBTQ Young People in Care: Co-devising research-led training materials for Multi-Professional Practice
Working with a group of young researchers who are all care experienced and identify as LGBTQ the CLAHRC EoE supporting LGBTQ young people in Care project aims to ensure that key messages from research inform the development of training materials to improve multi-professional practice.
The project is building on the findings of the SpeakOut study funded by the ESRC. LGBTQ young people in care are a particularly vulnerable group and there is limited knowledge about how many young people in care identify as LGBTQ or how best to support them. A national survey carried out by the research team found that the key barriers to providing effective support identified by service managers are staff confidence and staff knowledge.
Through facilitated creative workshops the team plans to make a short animated film bringing young people’s perspectives to the forefront of training. The young researchers will also be involved in writing a good practice guide and associated training materials in association with Coram BAAF. The training materials will be piloted in five partner agencies across the East of England. The team will share their findings and reflect on the PPI process at the INVOLVE conference in November.
Further information can be found at https://www.uea.ac.uk/speakout
CLAHRC East of England: Impact of Patient and Public Involvement (PPI): Completing the Feedback Cycle
Background: Patients and Public involvement (PPI) in research is defined as an active partnership between the public and researchers in the research process, rather than the use of people as ‘participants’ of research. Service users / PPI representatives provide comments to researchers (on research proposals or documents) and researchers are encouraged to provide feedback to PPI representatives so that the PPI representatives know if their comments are worthwhile or useful. Evidence indicates that this feedback is not routine and is very variable.
Aims: The research idea for this study was initiated by PPI representatives themselves. It aims to:
- determine the variation in types and extent of feedback given by researchers to PPI representatives in up to 6 PPI organisations in the East of England (EoE) region
- investigate the enablers and barriers to feedback and how such barriers could be overcome
- develop and test a co-produced and user-generated PPI feedback tool/prompt.
Participants and methods: Six established PPI groups across the EoE have expressed an interest to participate: six PPI leads, 227 PPI representatives and 316 researchers who have used the PPI groups in the past 18 months. PPI representatives will be recruited via their PPI organisation and are being asked about their experiences of PPI as members of the public not as patients.
The proposed research has 5 phases:
- an on-line survey questionnaire on the views and experiences of the PPI representatives in the groups and researchers
- interviews (telephone or face to face) with up to 6 PPI leads, 10 PPI representatives and 10 researchers (purposively selected to demonstrate a range of views)
- before audit of feedback within the 6 PPI groups
- development of Feedback prompt/tool (based on results of survey and interviews)
- after audit of feedback.
Elspeth Mathie – E.J.Mathie@herts.ac.uk University of Hertfordshire
Helena Wythe – H.F.Wythe@herts.ac.uk University of Hertfordshire
CLAHRC East of England: Launch of our ‘Patient and Public Involvement (PPI) in Research Handbook’, informed by PPI representatives and researchers
We are pleased to announce the launch of our Patient and Public Involvement (PPI) in Research Handbook. Aimed to be a ‘first-port-of-call’ resource for researchers new to PPI and / or at the start of their project, the handbook includes:
- Key points to consider when planning and carrying out PPI throughout the research process
- Signposting and links to existing online resources and tools
- PPI representative and researcher perspectives on common challenges and ways to support good practice
A number of PPI representatives and researchers contributed to the handbook through various means including: sharing experiences in CLAHRC EoE PPI masterclass training sessions; as members of the masterclass steering group; a researcher working group; and a review by the Public Involvement in Research group at the University of Hertfordshire.
We hope to complement existing resources available rather than re-invent the PPI resource wheel. Information on local PPI groups can be found in the appendix, which could be tailored to other CLAHRC regions as required. Through yearly reviews, the handbook will be updated to ensure links are still relevant and new research findings that inform PPI practice can be incorporated.
CLAHRC Greater Manchester: Involving people in large-scale change to health services
As part of the End-of-Life (EoL) Programme, CLAHRC GM has develop strong and sustained collaborative links with patrons of Dying Matters, St Ann’s Hospice and a number of Greater Manchester carer groups in Bury, Trafford and Manchester.
The strength of patient and public involvement in the EoL programme is perhaps best typified through CLAHRC GM’s study with Dimbleby Cancer Care, in uncovering the contribution, costs and economic value of family caregiving, where carers were extensively involved in a three-staged process of survey design. Dying Matters Patron, Tony Bonser, also assisted programme academic lead, Prof. Gunn Grande, and Jonathon Dimbleby, Chair of Dimbleby Cancer Care, in raising awareness of the study results and their first publication in Palliative Medicine – Dr Christine Rowland’s blog, ‘When Dimbleby came to breakfast; talking end of life care at the BBC’ , outlines the hive of activity and national media coverage the results received.
For further information, please contact Mike Spence, Programme Manager
CLAHRC Greater Manchester: Patients Play Central Role in the Design and Implementation of Rheumatoid Arthritis Research Project
The REmote MOnitoring of Rheumatoid Arthritis (REMORA) project aimed to design, implement and evaluate a remote monitoring system for patients with rheumatoid arthritis (RA). This was done through the creation of a bespoke android-based app which allowed regular data on RA activity to be entered and transferred to the patient’s electronic hospital record. Further details on the background and context for the study are available on the dedicated project page of the CLAHRC GM website.
The Patient and Public Involvement (PPI) group for REMORA was recruited very early in the timeline of the study and have been regularly engaged to support its delivery. All members of the PPI group are patients with RA so they had invaluable knowledge to share with the research team about what would support a patient-centred app design.
Study activities that the PPI group have been involved with include:
- Review and feedback of research materials (e.g. patient information sheets) that supported recruitment of patients as research participants
- Suggestions on REMORA app content and questionnaire design
- Feedback on early versions of the app, including entering mock data into pilot versions of the app
- Involvement of one of the members as an actor in a video about the study
Overall, the REMORA PPI group has played a critical role in influencing the design, implementation, testing and reporting of the study finding; they will further support the dissemination of the findings through speaking at an academic conference and facilitating the study feedback event for patient research participants at the close of the study in September 2017.
For more information, please contact Sue Howard, Programme Manager
CLAHRC Greater Manchester: The Role of the Research User Group in the Design and Implementation OSCARSS (Organising support for carers of stroke survivors)
OSCARSS is a research study that aims to evaluate the effectiveness of approaches to identify the needs of carers of stroke survivors and provide evidence about the impact on carer outcomes, health and social care costs and the delivery of support in practice.
Recruitment to the study commenced in January 2017; twelve months earlier a dedicated OSCARSS Research User Group (RUG) was formed to collaborate with the research team throughout the study; from development of the study design through to dissemination of results. RUG members were identified through the Stroke Association and through carers who had previously expressed an interest in research involvement. Each group member has experience of stroke, and of caring for a family member, and they have openly shared their experiences with each other and the wider team to the benefit of the study.
The RUG involvement to date includes advising on research design, study documentation, a staff training programme, recruitment processes and strategies to maximise recruitment. They have also promoted the study through blogs, presentations and videos.
One member of the RUG said: “Through our involvement with the project it is hoped that our voices and experiences as carers can be better understood and lead to improvements in services”
(RUG member and husband of a stroke survivor)
A video introducing the RUG is available here on the CLAHRC GM YouTube channel
So far over 300 carers have expressed an interest in the study with 193 carers having consented to take part. Recruitment is due to continue into 2018. For more information, please contact Katy Rothwell,Programme Manager.
CLAHRC North Thames: Involving people in large-scale change to health services
NIHR CLAHRC North Thames is looking into how PPI is carried out and its impact in the context of large-scale changes to health services through a scoping review of the literature and empirical case studies. The research team is holding an online consultation on their review’s findings and is looking for patients, members of the public, managers, clinicians, academics and anyone else previously involved in PPI in the context of large-scale change to comment on their findings.
The consultation website – reviewed by the CLAHRC NT’s Research Advisory Panel of patients, carers and members of the public – provides a lay summary of the findings and the opportunity for participants to comment on those and share their own experiences.
For more information, please contact Nehla Djellouli: firstname.lastname@example.org
CLAHRC North Thames: Evolving involvement
CLAHRC North Thames is working with an increasing number of patient and public contributors. We are also expanding their roles and level of involvement in more strategic discussions and decision making. We have for example created a public patient representative seat on the CLAHRC Management Board shared by three of our PPI contributors.
Our lay document review panel has increased to eighteen members and recently reviewed a manuscript for a BMJ paper – the Standards for Reporting Implementation Studies (StaRI) statement. This was an involved and demanding request due to the complexity of the material and their contribution was acknowledged in the final publication – a good precedent for future PPI in writing academic papers.
Members of our Research Advisory Panel have participated in research events, been part of discussion panels at national academic conferences, and have participated in training and development for researchers offered by the CLAHRC’s successful academy.
CLAHRC North West Coast: Be Involved
The public are involved in all CLAHRC NWC activities. We work in partnership in many ways, including developing public-led research projects (as with our ‘have your say’ mental health research), designing and managing projects, and sharing what we’ve learnt with others. Most members of the public involved in our work are called Public Advisers but one of our programmes, based in ten neighbourhoods where health is relatively poor has recruited Resident Advisers who are supported by 8 community organisations forming the CLAHRC NWC Community Research and Engagement Network (COREN). These Resident Advisers are collaborating with people working in local government, third sector organisations and the private sector to identify ways in which social, environmental and/or economic determinants of health inequalities can be improved to increase resilience in the neighbourhood.
- Forty-four registered Public & Resident Advisers are currently involved in CLAHRC NWC. We also engage with many more members of the public and a large number of patient and carer groups, regionally and nationally. For example, in 2016/17, we engaged with 13,659 members of the public at events and activities across the North West coast.
- In the 12 months prior to June 2017 our registered Public/Resident Advisers contributed 1,146 hours of time to CLAHRC work.
- The Public Reference Panel (PRP) is the collective voice for our Public/Resident Advisers. It has strategic oversight of our Involvement and Engagement Policy and Advisers have formal governance positions throughout the CLAHRC.
- Our Health Inequalities Assessment Toolkit (HIAT) helps us ensure that all our activities adequately consider health inequalities and that the public are always involved. http://www.hiat.org.uk/ . We have also co-produced resources to engage in discussions exploring health inequalities including ‘pop-up neighbourhood’ materials and a multiple-choice online quiz.
Dedicated videos, opportunities, activities and a blog are all part of CLAHRC NWC’s Be Involved pages on our website.
CLAHRC North West London: PPI + E at CLAHRC NWL
Quality improvement and patient and public involvement can jointly lead to more responsive improvements and innovations in healthcare. Our research has shown that the use of specific quality improvement methods help design and manage specific working environments to enable healthcare professionals and patients/public to work together for better healthcare design and delivery.
Our PhD researcher, Meerat Kaur is exploring this way of working in 6 improvement-focused organisations, collecting 100 hours of ethnographic observations and 38 semi-structured interviews. Early findings suggest that these working environments can achieve actual or perceived ‘value’ and encourage healthcare professionals and patients/public to continue to collaborate when improving healthcare in future initiatives.
For further information you can email Meerat at email@example.com.
Visit our blog to read and learn more.
CLAHRC Oxford: CLAHRC Oxford PPI newsletters
CLAHRC Oxford, as part of its commitment to encouraging and developing PPI recently launched two new newsletters for PPI contributors, each with its own focus and purpose.
‘PPI Pulse’ is sent out to our 150+ contributors seasonally and contains articles, interviews and stories related to PPI and research, both locally and nationally. PPI Pulse also enjoys a wide circulation via social media and email, with the summer edition having been downloaded or viewed over 500 times since its publication in early July.
The ‘Involvement Matters’ bulletin is compiled and sent out monthly to over 500 PPIE contributors by CLAHRC Oxford. It contains timely information and links to PPI opportunities, events, funding, training and news. Involvement Matters is an initiative of the Thames Valley Patient Experience Group, which consists of a wide range of local NIHR and NHS organisations working in partnerships to improve patient involvement, engagement and experience, and consists of professional and lay co-chairs.
CLAHRC Oxford: Young people’s experiences of psychosis
The CLAHRC has supported development of a Healthtalk module concerned with young people’s experiences of psychosis. The module will be a multi-media web-based resource where people can find out about what life is like for young people who experience psychosis.
The new module will provide practical information, advice and support to young people who have experienced psychosis, and to their family and friends. It will also be a valuable resource for medical and social care professionals, students and trainees.
Young people with psychosis are also on the steering group for the project as well as being participants.
CLAHRC Oxford: CLAHRC Oxford Comprehensive PPI Training
CLAHRC Oxford has developed and made available a comprehensive range of resources for PPI training for research staff, contributors and both together. These resources enable the CLAHRC to support PPI not only across our own projects, but also those of our partner organisations.
For PPI Contributors
- Working with Oxford BRC, a series of six workshops are planned in the autumn term following their successful piloting last year (read more about the pilot here).
- Working with local partners the CLAHRC is leading another series of workshops for PPI Contributors working in research, commissioning and service provision. The first was called ‘Increase your impact in public involvement’, the second ‘Introduction to Patient and Public Involvement’ and a third is currently being planned for October.
- Guide for working with PPI contributors
- Regular open PPI Q&A sessions held at a variety of locations convenient for researchers in the area.
- Occasional seminars arranged to tackle specific issues raised by staff in seeking advice from the PPI Coordinator. Previous examples include ‘running meetings with PPI Contributors’ and ‘PPI before you have funding’.
For PPI Contributors and staff together
- Quarterly inductions for new recruited staff and PPI Contributors
- Working jointly with Oxford AHSN and the Thames Valley CRN the CLAHRC is running a series of co-produced and co-delivered workshops throughout the year, open to all their staff and PPI Contributors. Titles include ‘Outcomes that matter to patients and the public’ and ‘Patient and Public Involvement in healthcare, approaches and techniques’.
CLAHRC Oxford: Talking about healthy, happy eating
NIHR CLAHRC Oxford-funded researchers contributed to an activity discussing diet and nutrition with Oxford’s local community as part of the annual Oxfordshire Science Festival in June.
Over the festival weekend, Oxford’s Town Hall played host to the Festival’s Explorazone, where research-based organisations from across Oxford came together with fun and engaging hands-on activities to inspire people of all ages with science and technology.
Through a colourful suite of activities, researchers talked to passers-by about how much sugar, fat and salt is really in what we eat, and the benefits of making simple food swaps. Activities included guessing how much sugar is in a range of everyday food products, investigating a typical basket of food for it’s potential to create healthy, balanced meals, and colouring activities for small children.
The team were also encouraging adults to sign-up for their patient and public involvement group, and to take part in CLAHRC-funded research on self-weighing.
CLAHRC South London: Patient and public engagement and involvement at CLAHRC South London
CLAHRC South London has a dedicated patient and public involvement (PPI) team led by Diana Rose, professor of user-led research at King’s College London. The PPI team works closely with the health themes to embed effective PPI in the CLAHRC’s work. One example of innovative PPI work at the CLAHRC is in palliative and end of life care, where our researchers have worked with patients, families, and members of the public to develop the first virtual forum for PPI in palliative care and rehabilitation research. This forum now has 60 patient and public members and 30 researchers.
The PPI team also undertakes its own research. The team has recently completed an analysis of psychological interventions in psychiatric acute wards comparing conventional outcome measures against measures based on the perspective of patients or service users. This showed that the patient-generated, patient-reported outcome measures (PG-PROMs) are more sensitive to changes brought about by psychological interventions on acute wards. As a result, NICE have recently recommended our PG-PROMs as a tool to help commissioners assess acute mental health services.
The PPI team has links with more than 400 local patient, service user, health and charity groups in south London, and each year, the team organises an outward-facing event called the Active Involvement in Research Day (AIRD). This year, around 100 people came together to find out more about the CLAHRC’s research and to discuss how to improve health services in south London.
CLAHRC South London: Working with service users in women’s health and maternity to create powerful educational films (CLAHRC South London)
Researchers in CLAHRC South London’s maternity and women’s health theme have worked closely with 34 women who have experienced serious complications in pregnancy or birth to produce an animated film about their experiences. The film, called ‘Always ask’, aims to empower pregnant women to overcome fears about speaking to professionals about their health concerns, and to trust their instincts. The film was promoted by Tommy’s charity through a national campaign, and received coverage on BBC Breakfast, ITV’s Good Morning Britain, BBC Radio Wales, BBC Radio 5 Live, and Sky News Radio.
Building on the success of this approach, researchers within the maternity and women’s health theme are now looking to develop a short training film about how best to care for women who have eating disorders during pregnancy and after birth. If you are a midwife, health visitor or GP and are interested in being involved, please email project coordinator Amanda Bye: firstname.lastname@example.org
PenCLAHRC: Using PPI to set the PenCLAHRC research agenda
PenCLAHRC works with healthcare professionals across the South West to identify areas of research that reflect the real needs and concerns of the health service. Our research prioritisation provides an avenue for these concerns to be addressed and the contribution of patients and service users is crucial to this process. Diana Frost is a member of PenCLAHRC’s Public Involvement Group, PenPIG and was one of three PenPIG members who attended the stakeholder event that concluded our 2016/17 research question prioritisation process. She shares her experience of the day here.
PenCLAHRC: A carer’s perspective on research
It is not just patients who have an important contribution to make to research – the experiences of carers are crucial in understanding how best to make our research relevant and to address the real concerns and challenges of both patients and carers.
As part of National Carer’s Week in June, Heather and Alex from our Public Involvement Group, PenPIG, spoke about their experiences of being carers and being involved in research. Read more here.
PenCLAHRC: PPI in practice: the COBRA trial
PenCLAHRC Public Involvement Group (PenPIG) member, Nigel Reed, formed an important part of the trial management team of the COBRA (Cost and Outcome of Behavioural Activation versus Cognitive Behaviour Therapy for Depression) trial and was a co-author on the trial’s paper in the Lancet in 2016.
Read Nigel’s story here.
PenCLAHRC: PPI in practice: the Singing with Aphasia trial
People who are living with aphasia following a stroke in Devon and Cornwall have been vital in designing a study that will ascertain the benefit of singing to people with the condition. Those with aphasia have difficulty with verbal communication, finding it difficult to speak or to put words in the right order. They can also have difficulty with reading and writing. Together, these problems can lead to feelings of isolation, loneliness and a lack of confidence. The project team worked with people with aphasia and a local charity, Plymouth Music Zone, to design a group singing programme. You can read more about the project here, and watch a short video of Jane, a member of the singing group talk about her experiences of participating in research here.
PenCLAHRC: PPI in study design: the INTERPRESS trial
PenCLAHRC’s Public Involvement Group, PenPIG, frequently contribute to the design of research studies. The INTERPRESS (Inter-arm blood pressure difference, cardiovascular events, cerebrovascular disease and mortality: an Individual Patient Data meta-analysis) study was redesigned following feedback from PenPIG and PI, Dr Chris Clark, believes that it is this input from PenPIG that helped the project secure funding.
Read more about the INTERPRESS project and watch a video here.
CLAHRC West: How to make public contributors feel part of the team: guidelines for patient and public involvement in evaluation launched
A new quick guide to patient and public involvement (PPI) in evaluation has been launched on the CLAHRC West website. The leaflet is for evaluators and commissioners of evaluation in health and social care. It offers an accessible guide to support anyone working in evaluation to embed PPI in their evaluation activities and to ensure that public contributors really feel part of the evaluation team. It outlines an approach to PPI in evaluation that is meaningful, collaborative, supportive, developmental, effective, reflective and ethical.
It is available on the evaluation pages of the CLAHRC West website.
CLAHRC West: Reducing drug use in female street sex workers and ensuring their voices are heard
As part of the CLAHRC West feasibility project looking at an intervention to reduce drug use among female street sex workers, they have worked closely with charity One25 to ensure these women can contribute to the project. Most female street sex workers in the UK are affected by the use of illegal drugs, such as heroin and crack cocaine. Street sex workers who are drug-dependent find using treatment services difficult and when they do, typically don’t benefit as much as other drug users.
They have developed a plan to improve the results of drug treatment for these women, by organising NHS and voluntary sector services to work together. This new approach involves creating a stigma-free environment for street sex workers to discuss their work in drug treatment groups, as well as addressing trauma as part of the drug treatment.
The women are involved in the project via an advisory group at One25, at meetings where refreshments and vouchers are provided to thank women for their work.
Find out more about how CLAHRC West is working with this often ignored group of people.
CLAHRC West: Preventing post-operative urinary retention: an example of researcher-patient co-productionThe CLAHRC West project to develop a protocol to reduce post-operative urinary retention (PO-UR) came from an idea by patient contributor Nick Leggett.
Not being able to pass urine is common after surgery. Catheterisation – inserting a tube to drain the bladder – lengthens inpatient stay and poses significant added risks, such as urinary infection and damage to the bladder neck. Patients can find catheterisation invasive, undignified, distressing and uncomfortable. Post-operative urinary retention creates substantial financial burdens for the NHS, by slowing patient flow and creating additional treatment needs.
Nick submitted an idea for research through the CLAHRC West open call in 2016. As a patient, Nick experienced post-operative urinary retention, requiring catheterisation, after three different common non-urgent surgical procedures. The project was taken on by NIHR CLAHRC West and Nick proposed that it should be developed, at every stage, as a pioneering form of co-production.
Find out more about our post-operative urinary retention project and Nick’s involvement.
CLAHRC West: Implementing our low dead space syringe findings: Darren’s story
Darren is a service user at Bristol Drugs Project (BDP), CLAHRC West’s partner on their project looking at service users’ attitudes to low dead space syringes. When he was approached by BDP to get involved in a series of workshops about implementing CLAHRC West’s findings, he jumped at the chance to ‘give something back’ to BDP.
When trying the new, safer low dead space syringes, not all BDP service users were happy. Some users were convinced the needles were less sharp than the old ones. These implementation meetings were vital to get a common understanding of the issues, to work towards producing a series of infographics to support service users’ switch to the new equipment.
Darren, along with BDP’s Jim Bartlett and CLAHRC West’s Mike Bell, presented the results of a service user workshop at a national stakeholder meeting. This was a unique opportunity for a service user to meet and give feedback directly to the manufacturers of the new equipment.
Read Darren’s story.
CLAHRC West Midlands: Public Involvement in Health Services Design Research (HSDR) Multimorbidity Project
CLAHRC WM and PEN CLAHRC are collaborating on a grant to develop an educational intervention to enhance the way people delivering care can work better together to look after people living with multiple long-term conditions. We believe that people who deliver care learn through experience, but this knowledge is tacit: it is hard to write down, verbalise or teach formally. We hope our intervention will enable people working in different teams and professions to share knowledge more explicitly through discussing case studies, followed-up by facilitated sessions in their practices.
Patients, their carers, and members of the public are playing an integral role in the project: at a strategic level and in our local sites. Our advisers are recruited from existing public involvement structures in the services. By recruiting advisers already involved in shaping healthcare services, our project can capitalise on expertise of people who understand the needs of local services, are best place to advise on interventions, and will help facilitate the effective dissemination of research findings and translation of best evidence into practice.
Strategic Level: The PPI co-applicant has been involved since the start of the bid and has worked alongside researchers to develop public involvement in the project and the educational intervention. PPI Advisers from CLAHRC WM’s Chronic Diseases Theme are working in partnership with researchers to ensure that the project is relevant to patients and meets their needs and priorities. Examples of impact include steering the project towards patient outcome measures that reflect the complexity of living with multiple long-term conditions.
Local Level: PPI Advisers have been recruited to each of the three project groups (Birmingham, Keele, Plymouth) to co-produce the educational intervention.
The experiences and insights of the PPI Advisers have been invaluable in ensuring that the educational intervention developed will help to address challenges patients with several conditions face. Service users and caregivers present in three consecutive workshops in each site, repeatedly reminded researchers and clinicians of the importance to consider in a holistic way what matters to them before going straight to trying to fix what they think is the matter. A particular area where patient and public advisers have added value is in the development of case studies to ensure they are grounded in reality and reflect lived experiences of patients and carers (i.e. generally making them more about personal and social rather than just medical aspects).
Patients in the three sites underlined the importance of working with the patient to establish and meet their needs: as one patient stated: “When I becomes we, illness becomes wellness”, a quote attributed to Malcolm X.
We look forward to continued involvement of the public, including participation in our consensus-building workshop, identification of suitable outcome measures, further development of the intervention and helping engage with clinicians and the public about our project.
CLAHRC West Midlands: GRIPP2 – New guidance for reporting patient and public involvement in research
The first international guidance for reporting patient and public involvement in research has been co-published in BMJ and Research Involvement and Engagement, led by CLAHRC WM’s Professor Sophie Staniszewska in collaboration with EQUATOR and others.
This guidance will improve the quality, consistency and transparency of the evidence base on public involvement and ensure future public involvement is based on best practice. You can access the full article here.
Guidelines for Reporting Involvement of Patients and the Public – GRIPP2 – is built on a number of systematic reviews that identified the often inconsistent reporting in papers of involvement and engagement (Staniszewska et al 2011, Brett et al 2012, Mockford et al 2012, Brett et al 2014). These reviews found that researchers did not always report public involvement, or they reported it partially, which meant we only have a limited understanding of what had happened in a study, impacting on the quality of the paper. Collectively this lost information has a significant impact on any evidence-base regarding public involvement, limiting the extent to which practitioners can draw on the evidence base to inform their practice.
For GRIPP2, the EQUATOR method was used to develop international consensus about the information that should be reported about involvement and engagement. A Delphi survey process was used, where participants indicate the extent to which they think certain types of information should be reported. From this emerged the idea of two versions of GRIPP2. One is a short form version, GRIPP2-SF, suitable for any study. The other is a long form version, GRIPP2 LF, suitable for studies with a primary focus on patient and public involvement (PPI), and for authors who wish to report a wider range of information.
We hope that funders and other journals internationally will utilise GRIPP2 in their guidance to researchers and authors.
For further information about the reporting guidance, please contact: Sophie.email@example.com
CLAHRC Yorkshire & Humber: Partnerships and Participation: Strengthening Patient and Public Involvement (PPI)
We have had a fantastic year so far! Our long established patient panel has been part of our successful bid as a new NIHR Patient Safety Translational Research Centre for Yorkshire and the Humber. Other notable collaborations include the co-created and co-led workshop at the UK’s first Science of Improvement Conference in Harrogate, last autumn. Our panel have also expanded the support they provide to the Improvement Academy for the Yorkshire and Humber AHSN.
Since January, a further patient advisory group for a five year NIHR funded programme of work – Partners At Care Transitions – has been established. This has involved outreach work with local communities in Bradford, such as, an older adult’s art group, a South Asian women’s health and social group and a stroke survivor group.
Working in partnership with patients, carers and the public is a strength that we will continue to build upon; ensuring research priorities and projects remain relevant and meaningful. So, watch this space as we move forward with our PPI vision!
The last word is from our vice–chair, Ruby Bhatti:
‘We are committed to ensure that our support will enable researchers to successfully support future projects which will benefit patients and carers. Our voice has been valued, listened to and acted upon and this gives us great reassurance that we are involved at all stages.’
For more information about our research please visit:
CLAHRC Yorkshire & Humber: NIHR CLAHRC YH has developed a Public Involvement training course for service users and carers.
This training is a two-day course, run about a month apart, that aims to give a general overview of public involvement in research and then be a hands-on practical introduction to the types of involvement that are common in NIHR CLAHRC YH.
The training was developed with lay members, as part of our Diabetes in Severe Mental Illness (DIAMONDs) work in our Mental Health and Comorbidity Theme. We are planning to run this course four times over the next year, and we are working with a University of Huddersfield team, including lay members, to evaluate the course.
It is currently open to our CLAHRC partner organisations in Yorkshire and Humber. Each day runs from 10am till 3pm and includes lunch and travel expenses.
If you would like more information please contact Christine Smith (Public Involvement Lead): firstname.lastname@example.org, 0114 226 5448.