Meet Chris and Susan.
North East and North Cumbria – federation workshop
Find out what people in the North East and North Cumbria said about plans to link Secure Data Environments (SDEs), including the potential benefits and the concerns that need to be addressed.
Our research
We regularly involve and speak to members of the public in our region about use of the health and care records in the Secure Data Environment.
Carrying out this research, listening and understanding the public is vital. Here are some of our findings:
Understanding Patient Data has a range of resources and materials which explain how health and care information is used in different ways.
Street Survey One
We spoke to members of the public across the North East and North Cumbria to understand their views on sharing anonymous health and care data through the Secure Data Environment (SDE). The results highlight levels of trust, perceived benefits, and any concerns people have about how health and care data is used.
See the key results:
Strong overall support for the SDE
People are broadly positive about sharing health data
Clear trust in NHS-led use of data
High trust in how data will be used
GPs and the NHS are key to confidence
People are happiest sharing data via the NHS
People see clear benefits from data sharing
Most believe sharing data helps everyone
Security is the main concern – not the idea itself
Concerns are about safety, not opposition
One group stands out: ages 35–44
Views are not the same for everyone
Appetite to learn more, but less to get involved
Interest exists, but engagement needs to be simple
People expect government funding
Impact Assessment
This report highlights key insights about how people in the North East and North Cumbria feel about the use of health data. It focuses on awareness, trust, concerns, and what helps build public confidence in the responsible use of data.
Who is more likely to opt out?
Opt-out is not evenly spread
Where you live makes a difference
GP practices strongly influence opt-out behaviour
Strong support for NHS use of data
People are most comfortable with data being used within the NHS
Conditional support, not blanket opposition
Concerns are about harm and fairness, not secrecy
Clear implications for Secure Data Environments
Public views on health data sharing - Focus Group 2025
The focus groups explored why some groups feel more cautious about sharing health and care data, and what would increase their confidence in the Secure Data Environment (SDE). Overall, people were open to the idea but wanted clear safeguards, transparency and control.
Support exists, but with conditions
Many participants supported sharing anonymised health data for research
People were particularly supportive when data could help:
improve NHS services
advance medical knowledge
support better treatments
• However, most people said support depends on strong safeguards and clear explanations
Clear explanations are essential
Participants often needed more explanation about what the SDE is and how it works
• Some were unsure:
how anonymisation works
who can access the data
how the system prevents misuse
• When the process was explained clearly, people were more comfortable with data sharing
Trust depends on who is using the data
• Strong trust when data is used:
within the NHS
by universities or health researchers
• Greater concern when data might be accessed by:
pharmaceutical companies
commercial organisations
• These organisations were sometimes viewed as profit-driven rather than public-benefit focused
Data security is the biggest concern
The main concerns raised were:
data breaches or hacking
unauthorised access
data being used for purposes people did not agree with
• Participants said strong security controls and oversight are essential
People want transparency and accountability
• Many participants said they would feel more confident if:
there were clear rules on who can access data
misuse had clear consequences
the public could see how data is used and what benefits come from it
• Transparency was seen as key to building trust
Views differ across communities
The focus groups explored specific communities including:
• rural residents
• women aged 30–59
• people on lower incomes
• younger adults/students
Young People engagement findings
We spoke to young people aged 16–24 across the North East and North Cumbria to understand their views on sharing health and care data through the Secure Data Environment (SDE). The results highlight levels of trust, perceived benefits, and any concerns about how health and care data may be used for research and planning.
Young people are generally supportive of data use for research
68–73% of 16–24-year-olds said they would be happy to share their health data for research purposes.
They were most comfortable sharing with:
• Their doctor or healthcare professional (90%)
• NHS teaching hospitals (64%)
Support was lower but still outweighed opposition for:
• Universities
• Charities
• Local councils
• Pharmaceutical companies
• Care agencies
Support is lower for non-research uses of health data
Between 23–51% said they would be happy to share their data for these purposes.
Just over half (54%) were comfortable sharing with:
• Their doctor or healthcare professional
More respondents were uncomfortable sharing with:
• Local councils
• Pharmaceutical companies
• Care agencies
Many young people want control over how their data is shared
Most respondents prefer to manage their own data sharing decisions.
• 71% would prefer to approve sharing themselves
• 24% would be happy for their GP or health service to manage this on their behalf
• Very few said they would refuse sharing entirely
Concerns about privacy and security
Many young people believe there are risks associated with sharing health data.
• 29–38% believe there are definite risks
• Around half believe there are risks to some extent
Common concerns included:
• Data security
• Who can access the data
• The possibility of individuals being identified, particularly in rare conditions
Trust in how data will be used varies
Levels of trust in the Secure Data Environment were mixed.
• 21–39% trust that their data would only be used for the stated purposes
• 24–39% reported little or no trust
• A large proportion expressed neutral views
Views about anonymised data are mixed
Between 44–63% of young people said they would be happy for an authorised NHS organisation to access their identifiable health record and then remove all personal details.
Among those less comfortable:
• Some wanted clearer explanations about why the data is needed
• Others felt consent should be requested before data is used
What we’ve heard from our communities
We have been speaking with communities and groups across the North East and North Cumbria to hear their views on the Secure Data Environment (SDE) and how health and care data is used and shared. These sessions give people the chance to learn about the SDE, ask questions and tell us what they think. Below, you can read about the groups we have spoken to and what they told us.
African Community Advice North East (ACANE)
Date: 15 July 2026
Number of participants: 10
The group talked about using data that does not identify people for NHS research and to improve services. People were generally supportive when the data could help improve health and was kept safe. They wanted to know what data would be used, why it was needed, who could use it and how it would help people.
The group also talked about trust, security and clear communication. People wanted strong safeguards to keep their information safe. They also wanted clear information about how their data would be used and reassurance that it would be used responsibly.
Crystal Pathways Young People’s LGBTQ Group
Date: 16 July 2026
Number of participants: 12
The group of 12 young people, aged 16 to 21, talked about the Secure Data Environment and how health and care data can be shared and used for research. They supported sharing data when it could help improve treatment, support research and mean people did not have to keep repeating their medical information. All 12 people said they were happy for their data to be shared for research.
The group felt that sharing data could improve care and help NHS services work better together. They also felt it could support research that may help other people in the future. The discussion showed that there needs to be clear information about people's choice to opt out of sharing their data, particularly for people who may be less confident using technology.
Date: 29 July 2026
Number of group attendees: 9, including one carer
The session gave brain injury survivors and carers the chance to share their views about health data, research and data sharing. The group talked about trust, keeping people's identity private and how research could help people. Overall, people were open to their health data being used if it was kept safe, did not identify them and was used to benefit people.
The session also showed how important it is to make information easy to understand. The group found it helpful when information was explained slowly, using simple words and examples. Explaining important terms first, such as what we mean by “health data”, could also help people understand the information and take part in discussions.
Date: 2 September 2026
Number of attendees: 14
The group talked about sharing personal data and using it for research. Several people felt that their data was already held in many different places and were comfortable with it being used safely for research. The group also supported Secure Data Environments working together. They felt this could help researchers study health conditions using information from more people.
Overall, the group supported sharing data for research, especially when it could improve knowledge and help people. One person suggested using the words “Population or public health data” instead of “Local Authority data”. They felt this may be clearer and more reassuring to the public.
Gateshead Visible Ethnic Minorities Support Group
Date: 23 September 2026
Number of participants: 13
The group was very interested in the Secure Data Environment (SDE). Most people supported sharing data for different purposes, but some people had concerns. The group talked about how difficult it can be to visit different NHS services and have to repeat the same information each time.
The group also talked about keeping data safe and preventing data leaks. Some people felt it was important to look at a person's health as a whole, including Eastern and Western medical practices. Overall, more than 90% of the group were happy for their data to be shared as long as it was kept safe.
