National CLAHRC Reporting
Background 

All recipients of National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) funding provide the NIHR with an annual report detailing the activity and progress made in the previous financial year. Annual reports provide valuable information that allows the NIHR to review performance, enable decision making on future funding requirements, answer Parliamentary Questions, prepare briefings for Ministers, respond to other requests for information, and share information amongst the NIHR Coordinating Centres. 

There is a patient and public involvement and engagement (PPI/E) section in the annual report that requests the following information, in no more than one page: Please summarise and report on the following areas: 
  • Progress made in the delivery of your aims and objectives as detailed in your PPIE strategy/ies. 
  • What activities and outcomes are you delivering? 
  • What partnerships and collaborations are you involved in? 
  • What resources are you deploying? 
  • How is monitoring and reviewing of progress linked into the reporting and governance structures of the CLAHRC? 
  • Any significant changes or revisions to your PPIE strategy/ies. 
  • Examples of the impact that your PPIE activities are having. This could be in individual research projects and / or across research areas and / or in the governance and management structures of the CLAHRC itself. 
  • Please highlight any significant successes or challenges. 
  • Please report on your involvement and engagement strategies separately. Please also describe how you make patients and the public aware of the research being undertaken within your CLAHRC, and signpost them towards appropriate information about participating in research. 
Each year, the NIHR makes the PPI/E sections of annual reports publicly available. All the reports in this series, both current and previous, can be downloaded from the NIHR website: www.nihr.ac.uk/ccf-ppie-reports 



NIHR CLAHRC Yorkshire and Humber Annual Report 2016/17: Patient and Public Involvement and Engagement (PPIE)

 Website

http://clahrc-yh.nihr.ac.uk/about-us

PPIE web pages

http://clahrc-yh.nihr.ac.uk/ppi/1-ppi-home

PPIE Strategy

https://docs.google.com/a/nihr.ac.uk/viewer?a=v&pid=sites&srcid=bmloci5hYy51a3xjbGFocmN5aHxneDozMjIzNzgyMTIwOGYwZjM1  

Contact Email

jenny.powell@sth.nhs.uk

Contact Phone

0114 2265518

Yorkshire and Humber has a long tradition of public involvement (PPI) in research.  In 2016/2017 there is a wide spectrum of successful PPI at project and Theme levels.  In particular, our focus on cohorts and participatory research methods represent the diverse, flexible, and multifaceted approaches embodied in our Co-production principle, and it is evident that our research teams highly value the public's knowledge and their contributions to research.  We have recruited a total of 25,344 participants into our research projects. 

Specific involvement highlights include:

  • actively involving service users to support impact on services and research: This includes 1) co-design of services, reflecting patient and public experiences and delivering locally driven proposals to Sheffield Clinical Commissioning Group (CCG) in the Translating Knowledge to Action (TK2A) Theme;2) developing  wristband equipment and  testing the rehabilitation gaming system (RGS) system for patients with poor mobility of their arms after stroke in the Telehealth and Care Technologies (TaCT) Theme; 3) developing PPI training package for service users and carers. This will be offered to all NIHR infrastructure in YH from Year 4.
  • PPI members as research team members: PPI Mental Health and Comorbidity (MHC) Theme team members have helped to develop funding bids and interventions e.g. the development of Diabetes and SMI intervention for an NIHR Programme Grant bid. Service users were steering committee members for an Health Services and Delivery Research (NS&DR) bid, and a PPI was also co-applicant on this bid.
  • Providing advice to improve the quality of projects. For example 1) in the TaCT Theme ADHD work; 2) with parentsand governors in HCHF to develop measurement tools and study materials 3) As a Frailty Oversight Group (FOG) member and co-author in a Frailty Theme publication about oversight groups in cohort studies

Public engagement forms part of our wider communications strategy, including regular Twitter and Mailchimp messages and newsletters e.g. the HCHF Born in Bradford newsletter (http://www.borninbradford.nhs.uk/uploads/downloads/newsletter-archive/BiB_News_20.pdf) was distributed to 13,000 families this year. 

A range of events has been held with the aim of making our work more accessible to the public  e.g. with stroke survivors and carers; older people and the Alzheimers Society; the University of Sheffield’s Festival of Life (https://www.sheffield.ac.uk/life/2016) and Festival of the Mind (http://festivalofthemind.group.shef.ac.uk/yorkshire-health-study/) showcased the PHI Theme Yorkshire Health Study through a video coproduced with an industry partner, Human Studios, and a Q&A session with the project Lead; the HCHF Theme contributed to a Wellcome Trust Engaging Science theatre project that toured school in Leeds in June 2016 (http://www.leeds.ac.uk/forstaff/news/article/5468/public_engagement_at_leeds_shines_at_national_award_ceremony?notags=true). 

The Healthy Children Healthy Families (HCHF) and Frailty Themes held celebratory events e.g. the Born in Bradford Family Festival in October 2016, which were organised in collaboration with their PPI groups.  The TaCT theme have set up a PPI database to hold a list of those who have consented to be contacted for either participation in research projects and/or PPI input into the development of projects.  There are currently over 50 members to date.  Professor Ade Adebajo, the programme’s Strategic PPI Lead, spoke at the regional NIHR Voices event in September 2016 (http://clahrc-yh.nihr.ac.uk/ppi/nihr-voices).  This event, attended by over 30 members of the public and an equal number of researchers, focussed on Equality and Diversity.

PPI is resourced through a combination of our NIHR budget and match funds, including participant reimbursement.  During Year 3 (2016/2017) the working group has experienced a significant reduction in capacity, due to long term sickness, changes in substantive roles and the loss of our dedicated PI coordinator. In response to these challenges, whilst the overall PPI Strategy (https://drive.google.com/file/d/0B3-SF4FxenwJZFl0Vmw2ejI1aG8/view) will remain unchanged, the PPI Working Group will undertake a refresh of the action plan in Year 4 (2017/2018). 

PPI is now led by the Senior Programme Manager Dr Christine Smith, and Professor Adebajo brings his wealth of experience to the Strategic Partnership Board.  The working group continues to successfully collaborate and contribute with colleagues to both the regional (Yorkshire and Humber NIHR PPI Community group ‘NIHR Voices’) and national PPI agendas through Involve and Patient, Public Involvement in CLAHRCs (PPIC).  Monitoring and review of progress in PPI is now timed to coincide with the quarterly PPIC reports.  These reports are also submitted to the NIHR CLAHRC YH Executive board.