Co-designing with communities – how we’re involving the public in a highly sensitive project

What is the Wessex SDE?

The Wessex Secure Data Environment (SDE) is a secure NHS computing platform designed to enable large amounts of de-identified patient data to be safely stored, linked, and made accessible to researchers working to improve services and treatments. 

Why do you need to involve the public in this project?

Health records are super sensitive. Patients rightfully feel a sense of ownership over their data, especially if they feel their community is marginalised or they’ve had negative interactions with public authorities, including the NHS.

Our commitment to public involvement is essential to gaining trust. Public involvement is not just a best practice, it’s essential for the SDE’s success and longevity. Working with people in this way ensures we understand the “red lines” individuals have about the use of their data. Equally important, it also allows us to identify the best use of this data in the public’s eyes – it sets our priorities. 

Health data is a sensitive subject – how did you get people engaged?

Talking to people about NHS data, online security, de-identification, researcher accreditation and so on could be dull. But people light up when you show them what unlocking the power of their NHS data can achieve with real world examples. We have been fortunate to have some amazing research projects to talk about, from improving pre-hospital care to cancer vaccines. It’s hard not to get excited when you see the size of the prize, and then everyone feels motivated to engage with the more complex aspects of the project. 

How have you involved the public in designing the Wessex SDE, so far?

We have taken a four-phase approach, with a mix of engagement and involvement opportunities. 

First, we engaged with seldom-heard and marginalised groups. We talked to about 600 people from more than 40 community groups. These discussions explored what was most important to each public groups or individual. Offering flexibility and a range of materials helped create a safe space in the workshops. These findings are directly influencing the design of the SDE.

Secondly, we convened the Wessex Public Panel on NHS Data over the summer 2024, bringing together about 50 people selected by lottery to reflect the diversity of the region. Over four days of deliberations this group drilled into the detail of how the SDE will work – they made recommendations on our core values, strategic priorities, and suggested policy details.

Our third phase is a ‘big conversation’, giving people across the region an opportunity to have their say. We’ve already completed some public polling that gives us confidence that we are heading in the right direction and are going back to seldom heard groups we spoke to at the start to share our progress. We will be talking to voluntary and community groups and advocates to get the message out and getting involved in local events. 

Phase four is launching the SDE, informed by all the feedback we’ve had. In reality this is a staged process where we will be testing and refining governance as we bring on board more data from NHS organisations. In this sense public involvement and engagement is an ongoing process. 

Since spring 2024 we’ve also benefited from the input of our Digital Critical Friends – a diverse group of 20 public contributors recruited from across the region. We’ve ensured they understand the programme so they can really check and challenge our work. They are involved directly in all aspects of the programme’s governance. 

How did you go about recruiting all these people?

We’ve worked hard to go involve a broad and inclusive range, especially those who’ve not been involved in NHS PPI work before. Relationships with seldom-heard groups take a long time to build. We worked with PPIE specialists in University Hospital Southampton (UHS) and the Public Involvement in Education and Research (PIER) Partnership at Bournemouth University, who made this dialogue possible. 

Sortition Foundation helped us recruit into our Wessex Public Panel. The hard work was keeping this group involved and enthused over a three-month period. Everyone was paid in line with NIHR standards for time and travel. To engage with the wider Wessex public we are using Censuswide for our polling work, and we’re collaborating with VCSE organisations, community advocates and leading researchers to promote the project through print and social media. We’re hoping to attend and co-host some events as well with the aim of reaching a good cross-section of communities. 

Lastly, our Digital Critical Friends have come from our engagement with seldom heard groups, public panel and other promotional activity.

How have the views of the public influenced the project?

Public feedback has been pivotal in shaping the SDE’s direction. People's views and comments have shaped the core values which will guide the SDE, informing us about what our research priorities should be, and setting the rules that will govern data access and governance. Working in this way ensure we will meet community expectations for privacy, security and public benefit. 

Moving forwards, public representatives will be involved in all decision-making processes and sit on our Data Access Committee, deciding which research projects can use the SDE. Not only are public views influencing the SDE now, we also have a long-term commitment to keeping the public informed and involved as the SDE goes live and grows over the coming years.

For more information please visit - https://wessexsde.nhs.uk/