NIHR Leeds Clinical Research Facility Patient and Public Involvement Strategy 2015-17 Leeds Teaching Hospitals NHS Trust Beckett Street, Leeds LS9 7TF http://www.leedsth.nhs.uk/research LCRF PPI Strategy DB May 2015 Page 1
1. Context of PPI: Most medical research in the UK is funded by the Government, industry or medical charities. Early stage research, for example looking at how diseases work at a basic level, tends to be funded by the government. However for this research to have an impact on patients, the knowledge gained through early stage research needs to be developed into new treatments or services. (Translating research excellence into world class care: Leeds Teaching Hospitals NHS Trust http://www.leedsth.nhs.uk/research) 2. What is public involvement? INVOLVE, the partnership organisation established by the National Institute for Health Research (NIHR) to ensure partnership working with the public, patients and researchers, seeks to facilitate and enable the NHS, partner higher education institutions (HEI) and others to achieve a vision to advance NHS public health and social care research and improve the health and wellbeing of the nation. INVOLVE defines public involvement in research as research being carried out with or by members of the public rather than to, about or for them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials, undertaking interviews with research participants. INVOLVE uses the following terms to distinguish between the different activities: Involvement where members of the public are actively involved in research projects and in research organisations. Researcher explaining novel imaging techniques in rheumatoid disease Examples of public involvement are: as joint grant holders or coapplicants on a research project involvement in identifying research priorities as members of a project advisory or steering group commenting on and developing patient information leaflets or other research materials undertaking interviews with research participants user and/or carer researchers carrying out the research. LCRF PPI Strategy DB May 2015 Page 2
Participation where people take part in a research study. Examples of participation are: people being recruited to a clinical trial or other research study to take part in the research completing a questionnaire or participating in a focus group as part of a research study. PPI benefits research. Involvement has the potential to have a positive impact on all those involved. 3. Value of research Potential individual benefit/societal contribution through knowledge generation Research relevant to meet societal need Improved design/delivery Participant Researcher PPI Public Patient/public voice Increased relevance/improved design of research Societal benefit/ increased awareness Further information and examples of effective patient and public collaboration and partnership working can be found at: (http://www.invo.org.uk/find-out-more/what-is-public-involvement-in-research-2/) In 2014 the NIHR published a key strategic plan entitled Promoting a Research Active Nation to encourage public engagement and participation in health, social care and public health research. LCRF PPI Strategy DB May 2015 Page 3
Included in this plan is the NIHR initiative OK to Ask. The aim is to grow the number of people taking part in research by ensuring that: there are more opportunities to take part in research that people can access better information about recruiting clinical trials through tools such as the UK Clinical Trials Gateway that their experience of participating in research is a positive one An annual celebration and promotion of health research International Clinical Trials Day (20 th May) supplements this campaign and is supported across the NHS, helping to embed a research culture and awareness amongst NHS staff, patients, carers and the general public. 4. Local Context: The National Institute for Health Research (NIHR) Leeds Clinical Research Facility (CRF) is hosted by and operates from three designated sites within Leeds Teaching Hospitals NHS Trust. The CRF provides the necessary research specific infrastructure and space to capitalise on areas of significant research strength in Leeds and expand our capacity and capability to conduct high quality, experimental research within a safe environment for the benefit of patients. Our CRF s are located at: Chapel Allerton Hospital Focus on musculoskeletal diseases and closely aligned with the NIHR Leeds Musculoskeletal Biomedical Research Unit (BRU) http://lmbru.leeds.ac.uk/ Leeds General Infirmary Focus on cardiovascular diseases http://medhealth.leeds.ac.uk/info/500/leeds_institute_of_cardiovascular_and_metabo lic_medicine St James University Hospital Focus on cancer, both solid tumours (oncology) www.cancerresearchukcentre.leeds.ac.uk and blood cancers ( haematology) http://medhealth.leeds.ac.uk/info/940/experimental_haematology 5. Our Vision: The Trust has an ambitious strategy over the next 5 years to translate research excellence into world class care, by becoming a global leader in clinical research and innovation, in direct partnership with the University of Leeds and other national and international collaborators. LCRF PPI Strategy DB May 2015 Page 4
The University of Leeds, Faculty of Medicine and Health has strategic plans to facilitate a step change over the next 5 years in the quality, volume and impact of world-leading research carried out in Leeds, building on existing strengths and a commitment to interdisciplinary working, new technology platforms and focus on Included in this is a plan to build a vibrant research active and capable community of PhD and post- doctoral researchers, in order to develop the research leaders of the future. The Leeds CRF is an integral component of these plans, and our success and growth as a UK network Clinical Research Facility will be fundamental. All this will require the support and input of patients and the public, whose voice, experience and life skills can directly and positively impact on the questions, design and successful delivery of our research endeavours. Experimental medicine treatment facility Leeds CRF 6. Realising our Objectives: We aim to provide medical and scientific colleagues, engaged in experimental research health related research programmes/studies/clinical trials with informative, supportive and insightful PPI involvement in their work through our existing, well established PPI panels. This will include all stages of the research process Early career researchers engaged in medical fellowships and doctoral studies will be encouraged to seek and involve PPI in their work. PPI lead will work with colleagues and existing PPI members to facilitate training of researchers, utilising the CRF to engage and best utilise PPI in their work We will establish a new panel with particular interest/experience in cardiovascular illnesses We will seek innovative ways in which to sustain and expand the capacity and capability of our PPI membership, including outreach community work where representation of diverse ethnic or disability groups as appropriate to our research interests is under represented LCRF PPI Strategy DB May 2015 Page 5
Provide inspirational and informative education and training for PPI members, providing effective support and guidance whilst ensuring the panels are lay-led and understand the framework and terms of reference within which they function in the research process Provide up to date information and sign post to opportunities for PPI involvement through our websites Seek and act upon the ideas and enthusiasm of PPI members to enhance involvement and recruitment drives utilise organisational PPI champions to steer the direction of PPI for the CRF bottom up approach We will continue to develop and refine materials that illustrate the value and contribution of PPI for patients and the public, including recruitment booklets and newsletters Develop research dissemination strategies to improve public awareness and knowledge transfer, again in conjunction with local, regional and national strategies Raise the overall profile of the CRF locally, regionally and nationally through positive interaction with the broader UKCRF Network. To achieve these goals this we will ensure that our activities are closely aligned and undertaken in conjunction with the organisational Patient Experience Team, NIHR Clinical Research Network PPI activities, other NIHR entities within the trust and charity partners as appropriate. 7. Funding to underpin PPI: The mixed funding model to date, including charity, network and NIHR is utilised in support of PPI panel meeting support, subsistence and travel costs and wider PPI activities. Going forward a renewed and sustainable financial plan will be implemented to ensure our PPI activity remains vibrant, inclusive and effective and our PPI members feel supported, valued, effective and empowered. LCRF PPI Strategy DB May 2015 Page 6