Help shape decisions on who can request access to patient data

The NHS Secure Data Environment (SDE) Network is inviting members of the public to help shape how decisions are made on who can be approved to request access to data for research.

An SDE is a secure, virtual space where approved users and organisations can access health and care data for a specific research project. This may include developing new treatments, identifying new ways to predict illnesses or improve care. The NHS Research SDE Network covers the whole of England, with one national and 11 regional, NHS-led SDEs.

Data access is tightly controlled. Only approved researchers, working for approved organisations, can access the data for approved reasons. The data is kept secure through a combination of technology, independent approvals and legal controls.

Before users and organisations can ask for access from SDEs, they must first be validated. Validation checks alone do not allow access to data. They are part of the overall data access process. Where validation decisions need more scrutiny, they are escalated to a Validation Committee for review.

The SDE Network has previously worked with patients and the public to develop decision making principles for validation. Two focus groups were held earlier this year to discuss the scope of validation checks, the role of a Validation Committee and guiding principles for decision making.

Now, we want to build on this work and explore views further - particularly on how decisions are made in more complex or unclear cases.

Get involved

Over the coming months, we are running a series of online workshops to discuss two key areas:

  • Which criteria should be used to escalate users and organisations to the Validation Committee for further scrutiny when requesting validation

  • What principles the Committee should follow when making decisions on these cases.

Workshops will last between 2 and 4 hours. By taking part, you’ll help make sure decisions about validation reflect public expectations and values.

A voucher to the value of £60 will be offered to thank you for taking part and to recognise your involvement in this workshop. Vouchers can be used at a variety of retailers and companies of your choosing.

To register your interest, please complete the form below.

For more information, please contact: england.data.healthresearch@nhs.net

The NHS Secure Data Environment (SDE) Network is inviting members of the public to help shape how decisions are made on who can be approved to request access to data for research.

An SDE is a secure, virtual space where approved users and organisations can access health and care data for a specific research project. This may include developing new treatments, identifying new ways to predict illnesses or improve care. The NHS Research SDE Network covers the whole of England, with one national and 11 regional, NHS-led SDEs.

Data access is tightly controlled. Only approved researchers, working for approved organisations, can access the data for approved reasons. The data is kept secure through a combination of technology, independent approvals and legal controls.

Before users and organisations can ask for access from SDEs, they must first be validated. Validation checks alone do not allow access to data. They are part of the overall data access process. Where validation decisions need more scrutiny, they are escalated to a Validation Committee for review.

The SDE Network has previously worked with patients and the public to develop decision making principles for validation. Two focus groups were held earlier this year to discuss the scope of validation checks, the role of a Validation Committee and guiding principles for decision making.

Now, we want to build on this work and explore views further - particularly on how decisions are made in more complex or unclear cases.

Get involved

Over the coming months, we are running a series of online workshops to discuss two key areas:

  • Which criteria should be used to escalate users and organisations to the Validation Committee for further scrutiny when requesting validation

  • What principles the Committee should follow when making decisions on these cases.

Workshops will last between 2 and 4 hours. By taking part, you’ll help make sure decisions about validation reflect public expectations and values.

A voucher to the value of £60 will be offered to thank you for taking part and to recognise your involvement in this workshop. Vouchers can be used at a variety of retailers and companies of your choosing.

To register your interest, please complete the form below.

For more information, please contact: england.data.healthresearch@nhs.net

Page last updated: 28 Aug 2025, 04:54 PM