Public Members Needed
Can you help set-up a trusted way to use patient data in planning & research?
Understanding our Data Community of Practice
Collecting, understanding, and sharing patient data is important for the care of both individuals and groups of patients. Patients, the public and health and care staff need to be part of the discussions about how this happens, and given opportunities to share their thoughts and experiences. As part of the development of our SDE we have involved staff and the public from the beginning. We continue to do this through our Understanding Our Data Community of Practice.
Communities of Practice (CoP) are groups of people who share an interest in a particular topic or area of work and are committed to building trust and helping one another to achieve what they want to do. They create value through sharing thoughts and ideas and developing new knowledge, capabilities, and practice.
The Thames Valley and Surrey Understanding Our Data Community of Practice brings together patients, members of the public, and health and care staff to help co-design the processes, governance and frameworks that will underpin how the SDE is set-up, governed and managed.
Co-design workshops
As part of the development of our SDE we have run three workshops with members of our Community of Practice.
Data access and approvals: workshop 1
Our first workshop in March 2023 explored important topics that we need to understand to help design the data access process for our local SDE, the following questions were discussed:
- What data should go into the SDE? Does it matter to you what data is included? If it does then which data might be of concern?
- What can SDE data be used for? What sort of research and analysis should be supported? What benefit should this research and analysis be trying to show?
- Who can access the data in the SDE? What do we need to know about them? What checks are needed?
Communications and governance: workshop 2
Our second workshop looked into how we design the governance of the SDE and communications, discussing:
- Who should be involved in making decisions about how the SDE is run once it is established? These decisions would include:
- Which people/organisations can apply to access data?
- Which projects, from approved people/organisations, are approved for data access?
- How should we involve people in these decisions?
- Who needs to know about the SDE?
- What do different groups need to know?
- How should we tell them?
The value of data: workshop 3
Our third workshop in September 2023 discussed the things that should be considered/included in the value framework for the SDE. We know that most people are willing to share their health data so long as there are benefits to the NHS, patients, and/or the public. The conversation explored what we mean by ‘value/benefits’:
- What are the different kinds of value that projects which access SDE data should be expected to deliver? For what, and for whom?
- How do we balance financial value with other aspects of public values?
- Are some kinds of value more important than others?
What next…creating transparency and awareness
- Working with seldom heard groups
- Co-develop and co-deliver training for staff and public data champions to support understanding and awareness of health and care data: what it is; how it is used and what rights people have
- Develop network of public and staff data champions to raise awareness about understanding and using patient data
- Ongoing work with our Understanding our Data Community of Practice to continue to co-design our SDE
If you would like to join our Understanding our Data Community of Practice, please contact us at tvssde@ouh.nhs.uk or complete the form below:
