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Patient and Public Involvement and Engagement (PPIE) Guidance

PPIE plays a central role for SDEs, ensuring that the use of health and care data for research is transparent, ethical, and aligned with public expectations. Its core role is to bring the voices of patients, carers, and the wider public, particularly those with lived experience, into decision-making about how data is accessed, used, and governed.

In practice, PPIE in SDEs helps to:

  • Build trust and transparency by making sure the public understands how their data is used and by influencing products such as data use registers and public-facing materials.
  • Inform decision-making by involving contributors in the review of data access applications, ensuring that proposed uses of data reflect public values and benefit patients.
  • Strengthen governance through embedding public members in boards, advisory groups, and oversight committees, where they can challenge, scrutinise, and shape policies and processes.
  • Promote inclusivity and equity by actively engaging under-represented and seldom heard communities, ensuring diverse perspectives are reflected in how data is used for research.
  • Improve systems and processes by feeding back insights from engagement activity, which can lead to changes in policies, communication, safeguards, and user experience.
  • Enable co-production by working collaboratively with the public to design engagement approaches, develop resources, and shape SDE priorities.

Overall, PPIE ensures that SDEs operate not just as secure technical platforms, but as socially legitimate and publicly accountable systems that use data in ways that are trusted and beneficial.

From its inception, we have embedded coproduction in the activities of the TVS SDE. This is because we want to understand, and act on, the perspectives of a wide range of people so that we create a trustworthy, and trusted, organisation. These perspectives include: people whose data it is; people who generate the data and those who are custodians of the data.

PPIE in Data Access Requests

The Data Access Request Form (DARF) collects information about patient and public involvement and engagement (PPIE). This helps us understand how patients, members of the public, carers or communities have helped shape the proposed work, or how they may be involved as the work develops.

Patient and public involvement is expected for most requests, but we recognise that it may not always be appropriate. Where no PPIE has taken place, or none is planned, the DARF asks for an explanation of why this is the case. Requests can still progress where this is clearly justified.

The information provided may include PPIE plans, activities already carried out, how public contributors have influenced the proposal, or relevant documentation prepared for other purposes, such as grant applications.

The SDE team can help applicants consider whether PPIE is required and what further options may be available. Additional support may have cost implications.

Further guidance is available from the following resources: