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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 hold regular workshops with members of our Community of Practice. Here are details of our TVS SDE coproduction approach and plan alongside our most recent Coproduction workshop report. 

  • 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?

  • How to Raise Awareness: Workshop 4

    Our fourth workshop in February 2024 discussed how we should approach designing an awareness programme. We know that people often feel strongly about how their health and care data is collected, stored, and used. However, research also suggests that many people do not know the details of how their data is managed. We explored the following questions:
    • What do you want/need to know about your health and care data? 
    • What do you think other people want/need to know about their health and care data?  
    • How do you want to find out information about your health and care data?  
    • How do you think other people might want to find out information about their health and care data?  
    • How can we start to raise awareness about health and care data and how it is used?  

  • Trust and Transparency: Workshop 5

    Our fifth workshop in October 2024 discussed how to support the local SDE to be a trustworthy service. Amongst other questions, we explored the following: 
    • What do you want or need to know in order to trust the SDE to use your health and care data? 
    • What do you think other people might want or need to know?  
    • How should the SDE tell you about what it does so that you can see that it is trustworthy?  
     

  • To Opt Out Or Not To Opt Out?: Workshop 6

    Our sixth workshop in January 2025 explored views on opt out. We considered:
    • The national opt out process
    • Why do people opt out?
    • The local SDE opt out
    • What do people need to make a decision on opt out?

  • Sensitive Data: Workshop 7

    Our seventh workshop in April 2025 focussed on sensitive data. All health and care data must be kept securely. People may, understandably, be most concerned about the privacy of certain types of theirs, or others, data. For example, data about conditions such as mental illness, genetic data or information about sexuality. We explored the following questions:
    • What does ‘sensitive data’ mean to you?
    • Why might you, or anyone else, think that some types of data are more sensitive than others?
    • What might you, or others, need to know to feel happy with data considered sensitive being collected and used for planning and research?
    • How could sensitive data be exposed? What impact could this have?
    • How do we protect sensitive data

Helping people understand health and care data

Four learning modules to develop local Health Data Guides

We are developing an e-learning course to train local health data guides. The guides will help build understanding amongst the public, and amongst health and care staff, about how health and care data is collected and used for individual care, planning and research. 

The course is aimed at health and care staff, and members of the public, living or working in the area covered by the Thames Valley and Surrey Secure Data Environment. They will be recruited to take part in an initial pilot. The learning from the pilot will inform future iterations of the content before it moves to wider rollout.  

A person doing the course may have some pre-existing knowledge of health and care data, or not. For example they might be: 

  • A retired person who is Chair of a Patient Participation Group (PPG) in a GP practice
  • Community organiser at Banbury Mosque – organises food bank, women’s lunches, education.
  • Band 7 nurse:  who might need to address patient concerns about how their data is recorded and used 

We have established a Data Literacy Advisory Group to help develop the course, which we aim to pilot in the summer of 2025.

 

What next…

  • Working with seldom heard and marginalised groups
  • Three further workshops planned for 2025/26
  • 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:

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