51±¬ÁÏÍø

Learn more about our PPIE Strategy

• Our PPIE goals and objectives

  We set out our goals below;. Further information on the actions and activities we will undertake to achieve them can be found in our PPIE Strategy.

  Goal 1: Good PPIE practices and decision-making

  Our goal is to ensure that we collaborate with a diverse group of patients, carers, the public (with varied lived experience), researchers, patient and public involvement and engagement (PPIE) professionals and health practitioners, when decisions are made.

  • Objective 1: We will embed PPIE good practices into how the organisation is managed and how we deliver our work.

  Goal 2: Public interests influence our work

  Our goal is to strengthen our public engagement, including unengaged and under-served communities, ensuring that their needs, interests and concerns are understood and influence our work.

  • Objective 2: We will work with our Public Advisory Board, 51±¬ÁÏÍø Voices members, researchers and health practitioners to collaboratively develop engaging communications and activities, which encourage feedback from patients, the public and carers.Ìý

  Goal 3: Trustworthiness and confidence

  Our goal is to use effective inclusive approaches to demonstrate trustworthiness and promote confidence in the ethical use and re-use of health data for research and innovation among diverse UK communities.

  • Objective 3:ÌýWe will involve the public in developing best practice guidelines for health data information governance and technology processes and activities. We will also engage with the public to raise awareness and enhance understanding of, as well as gain support for, health data research across the UK.

  Goal 4: Coordination and partnerships

  Our goal is to advance Patient and Public Involvement and Engagement in research and innovation at the local, regional, national and international levels.

  • Objective 4: We will actively share learning and work in partnership with existing data research organisations as well as those we are yet to engage. We will progress good practices within and outside of the organisation.
• Our values, principles and standards

  At 51±¬ÁÏÍø, our work is grounded in core values: Transparency, Optimism, Respect, Courage, and Humility. These values shape how we engage with patients, the public, and our research partners.

  We are proud to have signed the , which champions the adoption of the . We are also signatories of the , a set of principles that guide organisations in strengthening their support for public engagement. In addition, we have endorsed and adopted the developed by the Public Engagement in Data Research Initiative, which address key barriers to effective public engagement in data for research and statistics.Ìý

  We’ve carefully reviewed and mapped these frameworks to ensure they align with our approach to public involvement. This mapping is detailed in Appendix 1 of our PPIE Strategy.

• Who is our PPIE Strategy for?

  This strategy is designed to support a broad range of individuals and organisations, including patients, carers, the public, PPIE practitioners, and both local and national PPIE networks. It also addresses the needs of key stakeholders in the health data research sector, such as:

  • data science researchers
  • technicians
  • information governance specialists
  • health and social care professionals
  • data custodians (organisations that hold patient or public data)
  • research organisations
  • charities
  • voluntary and community sector groups.

  The strategy emphasises the many opportunities for these groups not only to engage with our work but to influence and co-deliver key initiatives with us.

  Cassie Smith, Director of Legal, Trust and Ethics at 51±¬ÁÏÍø, says:

  “Public and patient involvement and engagement is crucial to ensure that public benefit is at the heart of research and that uses of data are transparent and trustworthy.Ìý This strategy builds on 51±¬ÁÏÍø’s relationships with members of the public who are already involved in research activities and pilots new approaches to broaden the range of perspectives shaping health data science.”

• How we developed the strategy

  Our journey to develop our PPIE strategy began in June 2023 and culminated in our final engagement in September 2024. Throughout this process, we made it a priority to listen to a diverse range of voices—from those within 51±¬ÁÏÍø, to our public and professional advisory groups, and external experts in health data science and PPIE.

  In 2024, we also conducted an extensive public consultation on our draft strategy. These conversations not only highlighted what ·É±ð’r±ð doing well but also pointed out areas where we can improve.

  With this valuable input, 51±¬ÁÏÍø is committed to building on the strong foundations ·É±ð’v±ð established, addressing these challenges head-on, and driving meaningful progress over the next three years.

  Munisa Hashimi, PAB member, says:

  “I am thrilled to see the Patient and Public Involvement and Engagement strategy published. It has been a pleasure to be involved in its development from beginning to end, and I cannot wait to see ·É³ó²¹³Ù’s next for the organisation’s work in this area.”

  Below is a summary of key activities that have shaped the strategy, from the beginning to publication.

  May – August 2023

  • Reviewed existing documentation.
  • Conducted consultation with the Public Advisory Group.

  September – October 2023

  • Explored and analysed 51±¬ÁÏÍø’s strengths, weaknesses, opportunities, and threats (SWOT) through engagement with the PAB, Strategy Steering Group (SSG), and 51±¬ÁÏÍø staff.
  • Developed a plain language strategy document with a PAB strategy sub-group and SSG.
  • Refined the strategy and work plan in consultation with the SSG, staff and our Senior Leadership Team (SLT).
  • Presented the strategy and work plan to the full PAB.
  • Completed stakeholder mapping.

  November 2023 – February 2024

  • Conducted wider consultation with the 51±¬ÁÏÍø community and external stakeholders, then revised the strategy based on feedback.
  • Consulted with the 51±¬ÁÏÍø Board.
  • Revised and finalised the draft strategy following consultation with the 51±¬ÁÏÍø Board.

  March – April 2024

  • Held a public consultation on the draft strategy, facilitated by .

  May – August 2024

  • Refined the strategy and updated the work plan in collaboration with the PAB strategy sub-group and SSG.
  • Consulted with the PAB and 51±¬ÁÏÍø PPIE Leads.
  • Consulted with the SSG.

  September 2024 – February 2025

  • Hosted stakeholder dissemination and feedback events with both professional and public members involved in the strategy development.
  • Finalised the strategy and associated work plan.

  June 2025

  • Published the final strategy, work plan and an easy-read summary.

• How we will monitor progress and measure success

  We will monitor progress by reporting regularly to our Public Advisory Board, PPIE Strategy Steering Group, and Senior Leadership Team, using agreed evaluation metrics. An annual report will also be published on our website for anyone to access.