Public involvement and engagement

Public voices are embedded at the heart of decisions about how NHS data is accessed and used through the South West Secure Data Environment (SDE).

Our public involvement and engagement ensures transparency and builds public trust. It makes sure the values and expectations of the communities we serve are reflected in how we govern data.

A group of women sit outside together having a hot drink and a chat

Our public involvement and engagement strategy has been co-produced with three of our experienced public contributors who have been part of the South West SDE programme since the beginning.

Our public contributors are our Digital Critical Friends. They are members of the public who have been trained to understand how data can be used in research. They help keep the public’s perspective at the heart of our decision making.

Our mission

  • Protect patient data through strong security and governance
  • Ensure transparency in how data is accessed and used
  • Embed public voices in decision-making
  • Support research and innovation that benefits the NHS and local communities

Why public involvement matters

Our Digital Critical Friends have been involved at all stages of the South West SDE programme. They have even been involved in national reviews and strategies that led to the formation of the SDE programme, including the Goldacre Review (2022) and the Data Saves Lives strategy (2022).

These reviews highlight the importance of public trust in the use of NHS data for research. SDEs were created to address this issue, ensuring data is accessed safely, remains within secure systems and is only used for approved purposes.

For the South West SDE, meaningful public involvement is essential, ensuring:

  • Decisions about data access reflect public expectations
  • Ethical standards remain high
  • Transparency and accountability are built into every stage of the programme
  • Public contributors play a key role in shaping governance, reviewing data access decisions and influencing partnerships and commercial models

Our aims

Our strategy is built around four core aims.

Inclusive governance: Transparent, accountable decision-making

  • Embed patient and public voices in governance structures such as the Data Access Committee (DAC), management and leadership groups, to include our Digital Critical Friends in decision making activities
  • Ensure decision-making processes are clear, consistent and understandable
  • Publish accessible updates on how data is used and how decisions are made

Diverse perspectives: Representation that reflects our region

  • Recruit and support a diverse group of public contributors, including Digital Critical Friends
  • Remove barriers to participation, including financial, accessibility and logistical challenges
  • Ensure that voices from under-served and marginalised communities are included

Active public engagement: Involvement that drives real change

  • Run targeted outreach and engagement activities with communities across the South West, including rural, coastal, and under-served groups
  • Build long-term relationships with community organisations
  • Create regular feedback loops so that public insights directly influence programme decisions
  • Increase public awareness of the South West SDE and how data is protected

Responsible and ethical partnerships: Ensuring public benefit from data use

  • Develop ethical, transparent approaches to commercial partnerships as part of our life sciences strategy
  • Ensure that any financial benefits are reinvested into NHS services and community health
  • Involve public contributors in shaping sustainable models for data access
  • Publish clear information about pricing, licensing and partnership decisions

How we will deliver this strategy

Strengthening governance and public representation

  • Recruit, train and upskill our Digital Critical Friends
  • Embed Digital Critical Friends across programme workstreams
  • Ensure public representation on the Data Access Committee

Engaging communities across the South West

  • Build on a series of workshops we have already carried out across the South West and continue to run further targeted workshops with under-served and under-represented communities
  • Partner with local organisations to reach groups who are often excluded from data conversations
  • Publish regular updates on how public input shapes decisions

Ensuring ethical and transparent partnerships

  • Hold public workshops on financial sustainability and commercial models
  • Share updates on partnership decisions and reinvestment plans
  • Work with other regional and national SDE networks to share best practice

Measuring success

We will track our progress through clear, public-facing measures, including:

  • Meaningful public involvement from our 14 Digital Critical Friends, with at least two embedded in each of our six workstreams and actively contributing to programme shaping decisions
  • Increased diversity of public contributors involved in governance
  • Number and reach of community engagement activities
  • Evidence of public input shaping decisions, with key decisions and milestones made with a Digital Critical Friend present to share the views. Digital Critical Friends are part of our leadership board
  • Transparent reporting on partnerships and sustainability models

These measures will be reviewed regularly and shared publicly to ensure accountability.

Our commitment

Public involvement is not an add‑on – it is central to how we work. The South West Secure Data Environment is committed to building a reliable, trustworthy, transparent and inclusive model for the use of NHS data in the South West.

By embedding public voices at every stage, we aim to create a data environment that reflects the values, priorities and expectations of the people it serves.

Our Digital Critical Friends

Amanda, one of our Digital Critical Friends
Amanda Digital Critical Friend
Mary, one of our Digital Critical Friends
Mary Digital Critical Friend
Mina, one of our Digital Critical Friends
Mina Digital Critical Friend