Not yet recruitingObservational

Exploring the public's opinion on the use of their data in biobanking, linked to routine medical records, and the use of artificial intelligence in care and medical research

This study is gathering opinions from people across the UK about how their health data is used in medical research. We want to understand what you think about storing biological samples (like blood) in "biobanks," using information from your medical records, and the role of new computer technology called Artificial Intelligence (AI) in healthcare and research. This is especially important for those with ongoing conditions like inflammatory bowel disease or arthritis. Your views will help shape future rules and strategies to ensure medical research is done in a way everyone trusts. We're also interested in how things like your background might affect these opinions. Your participation can help guide researchers and policymakers to handle health data responsibly.

At a glance

Status

Recruiting

Sponsor

NIHR Newcastle Biomedical Research Centre

Enrolment target

500

Start

14 May 2026

Estimated completion

31 Dec 2027

Mainly focused on but not exclusive to chronic inflammatory conditions: GI (inflammatory bowel disease), musculoskeletal (inflammatory arthritis such as rheumatoid arthritis, ankylosing spondylitis), skin (psoriasis, eczema, hydradenitis), and liver (autoimmune hepatitis, primary sclerosing cholangitis, primary biliary cirrhosis).

What is this study about?

Medical science is always advancing, and new technologies mean doctors and researchers can learn more than ever before from our health information. This study is all about understanding what people like you think about how this information is used. We're looking at three main areas:

Firstly, there's `biobanking`. This is when biological samples, like blood or tissue from an operation, are carefully collected and stored. These samples can come from routine hospital visits or from specific research projects. Secondly, we're interested in your `routine NHS medical records`. With more health information stored digitally and linked together, these records offer a huge amount of data for researchers. Imagine all the information from your GP and hospital visits — it can provide powerful insights into health and disease. Thirdly, we're exploring `Artificial Intelligence (AI)`. AI is rapidly changing many parts of our lives, and it holds great promise for healthcare. Researchers use real-world health data to 'teach' AI how to work properly, for example, to help diagnose conditions or suggest treatments. The government is even looking into using AI more widely in the NHS.

Because technology is changing so fast, it's really important to know what people think about how their health data is used. This research aims to find out if people not only agree to their data being used but also feel that these practices are fair and meet their expectations. Your opinions are key to making sure that policies and plans for using health data – whether for biobanks, medical records, or AI – build trust and allow important research to continue in a sustainable way. While we're interested in everyone's views, we're particularly keen to hear from people living with long-term inflammatory conditions like inflammatory bowel disease, rheumatoid arthritis, or psoriasis, as using this data can be especially helpful for understanding and treating these conditions.

Key takeaways

Your opinion on health data use is crucial for future healthcare.
Study explores views on biobanks, routine health records, and AI.
Anyone over 18 in the UK can participate in the anonymous online survey.
Focus on improving trust and responsible use of health data.
Funded by NIHR Newcastle Biomedical Research Centre.

Who may be eligible?

You can take part in this study if you are 18 years old or older and live in the UK. We also need you to be able to understand English and have access to the internet, as the first part of the study is an online survey. If you're selected for an interview later, you'll also need to be available for that.

Unfortunately, if you are under 18, do not live in the UK, or cannot understand English, you won't be able to join this study.

We are particularly interested in hearing from people who have long-term inflammatory conditions such as inflammatory bowel disease, rheumatoid arthritis, or psoriasis, but anyone over 18 in the UK is welcome to take part in the survey.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

I am 18 years old or older.
I live in the United Kingdom.
I can understand English.
I have access to the internet to complete an online survey.

Answer every question to see your result.

What does participation involve?

If you decide to take part, the first step is to complete an anonymous online survey. This survey asks for your opinions on biobanking, using routine health records, and artificial intelligence in healthcare. It's designed for the general public, but also specifically for people with long-term inflammatory health conditions like those mentioned above. You can complete this survey from anywhere in the UK at a time that suits you.

After completing the survey, you'll have a chance to say if you would be interested in taking part in a more in-depth interview. The researchers will then carefully choose about 30 people from those who express interest. They'll particularly look for people who might be underrepresented in the survey or the wider population, such as those from different ethnic backgrounds or different age groups. If selected for an interview, you'll discuss your views in more detail, either online or in person if you're in the North East of England. You can receive some discussion topics beforehand to help you prepare. The study is planned to run from May 2026 to April 2028.

Potential risks and benefits

There won't be an immediate direct benefit for you from taking part in this study. However, your involvement is very important because your opinions will help guide researchers, doctors, and policymakers to make better decisions about how health data is shared and used in research, including for AI. This could lead to a more trusted and effective healthcare system in the future. We understand that discussing health data and privacy can sometimes be sensitive or upsetting, especially if you've had a negative experience with data in the past. To help with this, if you're chosen for an interview, you can receive the discussion topics in advance to help you decide if you still want to take part. Remember, you can also decide to withdraw from the interview process at any time. Your comfort and willingness to participate are very important to us.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

NIHR School for Public Health Research at University of Newcastle upon Tyne
City only
Newcastle upon Tyne, England

Common questions

What is a 'biobank'?

A biobank is like a library for biological samples, such as blood or tissue, that are collected and safely stored for future health research.

What does 'Artificial Intelligence (AI)' mean in healthcare?

AI in healthcare refers to computer programs that can learn from health data to help with things like diagnosing illnesses, suggesting treatments, or improving how hospitals work.

Do I have to have a specific health condition to take part?

No, anyone over 18 in the UK can take part in the online survey. However, we are especially interested in hearing from people with long-term inflammatory conditions.

Will my answers be kept private?

Yes, the online survey is anonymous, meaning your identity won't be linked to your answers. If you do an interview, your personal details will be kept confidential.

How long will the study run for?

The study is planned to run from May 2026 to April 2028.

How to find out more

Chao Dong

chaonan.dong2@newcastle.ac.uk +44 (0)7533150691 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.