Public perceptions of health data sharing for AI Research: the PHAIR study

About the study

Artificial intelligence (AI) technology is developing quickly. The UK government has prioritised research into AI for healthcare, to help improve the health of people in the UK. To develop and test healthcare AI, lots of information about patients is needed. This could be millions of patient scans, blood tests and other records. Sometimes, it is not possible to ask every patient for their consent, as so much information is needed.

This study aims to understand public views on sharing health data for AI research. This will allow us to make sure that public health data is shared appropriately.

Who can take part in this study?

We would like to hear from a wide range of people. 

If you are:

• Over 18 years old,
• Live in the UK/are eligible for NHS treatment,
• Have used NHS health care at least once since 2005,
• Can participate in an online English language focus group.

What to expect

If you would like to take part, you will fill in an online questionnaire with some details about yourself. You will then take part in a 90 minute, focus group on Microsoft Teams with five to seven other participants. During the focus group, we would like to hear your views on sharing health data for AI, and we will use some example scenarios to stimulate the discussion.

The steps below explain what to expect if you decide to take part in this research.

Consent process

To let us know that you are interested, you would e-mail us on: phair@ndorms.ox.ac.uk. We will send you more information about the study, including a participant information sheet, a one-page summary and a consent form. If you are happy to go ahead, you would sign the consent form and e-mail it back to us. If you would like more information or to talk it over first, we will arrange to speak with you over Microsoft Teams.

You can also download the participant information sheet here, and the one-page summary here.

Eligibility check

We will ask you to fill in an online questionnaire, which includes: your age, sex, ethnicity, your approximate household income, your highest level of education, geographical location (the county you live in), whether or not you have a health condition and roughly how many times a year you use the UK NHS.

This information will help us to make sure that we are hearing from a wide range of people. If there are many people who sign up, who are similar to you (for example, many people from the same county as you) we may prioritise people who are different (for example, someone from a different county). This is to make sure that people in our study are as diverse as possible.

If you are not able to come to a focus group, we will delete your information straightaway.

Focus group

We will invite you to one focus group. This will be held on Microsoft Teams, and last for 90 minutes, with a short comfort break halfway through. There will be between five to seven other participants. Two researchers will be join the focus group: one will lead the focus group and one will take notes and help with any technical issues.

We will video-record the focus group, so that we can analyse the conversation afterwards.

Follow up

We will ask you beforehand if you would like to hear about the findings of the study. If you agree, we will send you a summary of our findings within a year of the focus group.

How can I get involved?

Please email us on phair@ndorms.ox.ac.uk.  You can also download the participant information sheet here, and the one-page summary here.

Ethical approval

This study has been ethically approved by the University of Oxford CUREC (Ref. R79725.RE001).