PPI Strategy and delivery for the Research Capability Programme Maria von Hildebrand Patient and Public Stakeholder Engagement Manager

Strategic Goals To increase public awareness of health research and the value research can deliver as part of the patient journey through health and social care To improve public understanding of how patient data for secondary uses is being used in health research, and the safeguards in place to protect patient confidentiality To increase opportunities for patients and public to become actively involved in research which is relevant to them as outlined in the NHS Constitution

Objectives Embedding PPI in relevant RCP work streams Enabling PPI stakeholders to understand the role of the HRSS and its use of patient data to support research Asking PPI stakeholders to comment on information for the public regarding the processes, safeguards and sanctions in place to protect patient confidentiality Involving PPI stakeholders where appropriate to contribute to public governance

RCP Establishment of External Reference Group during enabling phase of RCP providing input overview and expertise. PPI membership provided by INVOLVE Commissioning Public Consultation on Secondary Uses Services of patient data Sep –Dec 2008 Embedding PPI into all works streams of RCP making it an integral part of the Programme Contributing to the development of the Overarching Governance Framework for the HRSS Pilot Programme Establishment of PPI Co-ordination Group to support HRSS Pilot Programme 2010

HRSS Pilot Programme HRSS Pilot Programme: an initial, interim service bringing in a small number of data sources and allowing a limited number of health research studies to be carried out. Set up to test the HRSS functionality, processes and services; helping to shape the future development of the service to meet the needs of researchers. Lessons learned from the HRSS Pilot Programme will inform the creation of the new Clinical Practice Research Datalink service or CPRD

Governance The RCP has stringent governance and assurance systems in place throughout its work streams to ensure due governance and accountability. PPI Co-ordination group as part of the HRSS pilot programme reports through the Chair of the PPICG to the Senior PPI Officer of the HRSS Pilot Overarching Governance Board HRSS Pilot opt out process subject of an independent PPI qualitative research project carried out by UCL: themes/e-health/projects/past/hrss Findings of the Evaluation Study will inform the development of the CPRD.

Information Governance Protection and security of Patient Data is the main tenet of the Service RCP using NHS Information Governance Toolkit to ensure due governance compliance and audit processes are followed PPI work stream contributed to the Privacy Impact Assessment process outlined by the ICO. PIA undertaken on prospective and iterative basis to demonstrate effective safeguards are in place ensuring due probity of the usage of public data in compliance with current UK Legislative Framework including Data Protection Act PPI Policy Statement ensuring due public governance developed for the HRSS pilot programme, and integrated into Governance Framework

Embedding PPI in the HRSS Pilot Programme Integration of PPI into the Overarching Governance Framework PPI membership on Overarching Governance Board (PPI governance scrutiny of the work of the HRSS) WWW presence, in support of transparency and to inform the general public on the Pilot HRSS Working with other PPI Groups and organisations (such as INVOLVE, National Voices, UKCRC, DH Informatics Directorate etc) Ensuring public participation locally, regionally and nationally through the establishment of the PPI Co-ordination Group Transparent appointments process of PPI Co-ordination Group Role Description and Person Specification Terms of Reference Briefing Pack

PPI Co-ordination Group Purpose: To support HRSS Pilot Programme and provide feedback loop across wider NIHR PPI work stream Membership criteria: 1.Lived patient experience 2.GP Research Active Surgeries involved in HRSS Pilot Programme 3.Local, regional and national foci

PPI Activity Reviewing and commenting on Patient Information Packs Creating local, regional and national network map of PPI stakeholders. Input to an NIHR patient leaflet on the use of Health Data in Research. Co-design of a Researchers Guide exploring the use of health data in research and the patient journey through research. Compilation of patient digital stories as educational tool for researchers. Mapping the patient data journey

Lessons Learned The Programme continues to process Lessons Learned, through its final phase. Highlights include: –Researchers would benefit from up front PPI in the design of their protocols - consider raising this with research funders when considering research applications –Communications to the general population is very complex, with diverse feedback on what constitutes effective, meaningful communications in this context –Pilot of research opt-out process, and UCL Report (lessons on communications methods, materials, route and associated costs) –Engagement via primary care (time, cost lessons) –Value of PPI Coordination Group input (Governance input as well as communications and engagement. Also engenders confidence with wider governance stakeholder community)