Patient and Public Involvement and Engagement Strategy 2017-2022 NIHR Biomedical Research Centre and NIHR Clinical Research Facility at Guy s and St. Thomas NHS Foundation Trust and King s College London 1 of 6
Context and Purpose The National Institute for Health Research (NIHR) Biomedical Research Centre (BRC) is a partnership between Guy s & St Thomas NHS Foundation Trust and King s College London. The purpose of the BRC is to conduct translational research which transforms scientific discoveries into new treatments and improved care for patients. The BRC was established as one of the first five Comprehensive BRCs by the NIHR in 2007, receiving a further funding award to continue its ground-breaking work via its second BRC in 2011. Following a competitive application process the BRC at Guy s and St Thomas were further recognised for their outstanding research achievements in 2016, with a funding award for its third BRC (2017-2022). This will allow it to continue the development of innovative research in a number of disease areas. In addition to the NIHR BRC, Guy s & St Thomas NHS foundation Trust is also home to a NIHR Clinical Research Facility (CRF) which is a dedicated space in which to carry out clinical research. Following a competitive application process in 2016, he CRF has also been awarded funding from 2017 until 2022 to continue its work. As part of these funding applications we submitted strategies for Patient and Public Involvement and Engagement (PPIE). The purpose of this document is to outline our organisational vision for PPIE and provide detail on our strategy for 2017 until 2022. Terminology Throughout this document there will be references to: Patient and Public Involvement (PPI) - Involving people in the design and conduct of individual studies and supporting the dissemination of research findings Public Engagement (PE) - Informing people about research to dispel misconceptions and obtain public support for research. 2 of 6
Our Vision All research taking place at Guy s and St Thomas NHS and King s College London will be designed, carried out and disseminated with a patient and public centred focus. By achieving this we hope to improve the experience for patients taking part in research at all stages of the research process. We want to create an environment where patients and the public can feed back and be assured that their feedback is being heard and used to shape improvements. The NIHR BRC and NIHR CRF will lead on the involvement and engagement of patients and the public with the goal of influencing patient focussed research across the NIHR Clinical Research Network portfolio at Guy's and St. Thomas' and King s College London and broader research activity within the institutions. Strategic Objectives In order to achieve our vision we will work towards the following strategic objectives which we have grouped into a number of work streams. Training & Development 1. Maintain and enhance the infrastructure and professional capacity across our BRC and CRF to maximise PPI and PE in BRC research 2. Inform and monitor cultural change across the wider Research and Development teams to ensure that more patients, families and members of the public are taking part in, or collaborating on, involvement and engagement activities Research Experience 3. Create a tool to routinely gather feedback from both research participants and members of the public to inform research improvements 4. Improve and increase the dissemination of research findings from BRC and CRF studies with a particular focus on reaching those who participated 5. Increase recruitment to studies through an improved patient experience Engagement & Networking Impact 6. Contribute to national policy through our work with INVOLVE and the UKCRF Network. 7. Establish methods of routinely collecting data on the reach and impact of our involvement and engagement work. 3 of 6
Projects Within each work stream we will undertake a number of projects and simultaneously monitor and measure the impact of all of our work. We anticipate new projects starting up throughout the funding period as we gather feedback from patients and the public, and as previous projects are completed. Some projects will focus only on a single objective but we intend that others will make contributions towards multiple different objectives. The BRC is also funding a programme of social science research which we will use to inform changes and develop new project ideas. Research Experience BRC Development of the BRC PPI Advisory Group BRC Addressing Data Privacy Concerns BRC Research Snapshots CRF Patients Referring Patients CRF Co-designing CRF Artwork and finishes with PPI members BRC/CRF Informing new research BRC/CRF Gathering and applying feedback Monitor & Measure Impact Training and Development BRC Implementing PPI in Research BRC Getting Involved in Research BRC Researcher Roadmap BRC Mock Interviews Engagement & Networking BRC Summer Schools BRC Establishing a PPI Group Network CRF Evelina London Video CRF Evelina Patient Diary CRF Graphic Facilitation Workshops BRC Social Science Research BRC/CRF Research Seminar BRC/CRF Science Gallery BRC/CRF International Clinical Trials Day 4 of 6
Monitoring, evaluating and reporting For each objective and for some individual projects we will undertake some baseline measurements e.g. the number of researchers who have attended training or who have previously sought advice on implementing PPI/E so that we can measure these numbers again in the future and properly assess our impact. We will submit an annual report to the NIHR detailing our progress on our objectives and publish an annual summary on our website. Throughout the year we will also routinely publish updates on project activity. We will review this document and our strategic aims at the midpoint in our funding in 2020. Governance Our BRC PPIE team consists of staff based at Guys and St Thomas NHS Foundation Trust (GSTT) and Kings College London (KCL). Operationally it is managed through the BRC Data Analytics team, however, our strategy and function is developed in collaboration with our PPI Advisory Group. The CRF PPI team works closely with the BRC team but is accountable to the CRF Board. PPI Advisory Group Data Analytics Board CRF Board BRC PPI Lead Prof Chris McKevitt Data Analytics Cluster Manager Alistair Weir CRF PPI Lead Kate Blackstone Research Associate Dr. Jenny Cook BRC PPI Project Manager Jacintha McGahon Claire O Neill 5 of 6
Partners and collaborators We will work closely with the following groups: The Patients and Public Involvement Advisory Group (PPIAG) INVOLVE The R&D Marketing and Communications team The NIHR Clinical Research Network The UK Clinical Research Facility Network GSTT Research and Development team NIHR Research Design Service (RDS), London The KCL Widening Participation Committee GSTT Patient Experience team (which incorporates PPI) GSTT Equality and Diversity team Clinical Commissioning Groups (CCG) in South East London Local Authorities Healthwatch Other NIHR BRCs and CRFs 6 of 6