Over the past year, our Patient and Public Involvement and Engagement group has been instrumental in shaping how we design, communicate, and deliver a secure, trusted environment for healthcare data research and planning.
How It All Started
Public engagement is fundamental to the success of data-driven research and innovation in the UK, as at the heart of it is health and care data that belongs to the public — and therefore, the public must have a meaningful role in shaping how that data is accessed, safeguarded, and used for public good. When the Yorkshire and Humber SDE programme was launched, we knew that public confidence and trust would be central to its success. We want our communities to understand how their health data is used, who can access it, and why. To ensure transparency and accountability, we created the SDE PPIE Group — a safe space where patients and members of the public could share their experiences, raise concerns, and influence decisions.
Our purpose was clear:
To provide an open, inclusive, and respectful environment for patient and public voices to inform, influence, and co-create the Yorkshire & Humber SDE.
Our members
Our PPIE Group is made up of diverse members of the public who bring unique perspectives and lived experiences. We’ve worked hard to bring together a truly representative group from across the region and to create an inclusive space where every voice is valued, and quieter members are encouraged to contribute.
Key principles guide our work: respect, kindness, openness, critical thinking, and equal participation. These principles have helped us build trust and foster meaningful dialogue.
What We Covered Over the Year
Throughout the year, the group explored key topics that matter most to the public, including:
- Data Security and Governance
How our SDE meets the highest standards of digital and cyber security using the national Five Safes framework.
- Transparency and Awareness
Building understanding of where data is stored, who can access it, and the role of universities alongside NHS systems.
- Consent and Governance
Ensuring health data is used ethically, securely, and only by authorised individuals. Embedding public voices in decision-making processes for data access requests.
- Linking NHS and Non-NHS Data
Discussing how combining health data with education, local authority, and other datasets can improve population health outcomes.
Impact on the Programme
The PPIE Group has had a tangible impact on the Yorkshire and Humber SDE programme by:
- Influencing Design and Implementation
Public feedback shaped how we communicate about our programme, what we deliver and how we do it.
- Building Awareness
Helping us identify gaps in public understanding of data flow and data usage for research purposes, therefore PPIE Group has been working on define clearer messaging for public audience.
- Embedding Public Voices in Governance
Informing the development of Data Access Committees and decision-making processes. Ensuring transparency and accountability at every stage.
Looking Ahead
As we celebrate this first year, we’re excited to continue working with our PPIE Group to deepen engagement and ensure that the Yorkshire & Humber SDE remains a trusted, secure, and inclusive environment for health data research.
“I want to personally express my thanks and appreciation to all of you for your time and dedication over the last year.
Our work is not just informed; it is enriched by your contributions, and that is what makes it truly meaningful.
Thank you for bringing your voice & those of your communities to this work to ensure they are always part of our decision making and future planning.”
Phil Waywell, Director of Yorkshire & Humber SDE