Meet Chris and Susan.
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
