NHS Data Consent Survey
What am I being invited to do?
You are being invited to take part in an online survey about the UK’s views on sharing National Health Service (NHS) (or Health and Social Care in Northern Ireland) health data, for both clinical and research purposes. This survey is open to anyone living in the UK over 16 years of age (or under 16 with parental permission). If you are under 16, please show your parent/guardian this page and ask if they are happy for you to take this survey. You will need to confirm you have their permission before you start the survey.
What will taking part involve?
If you agree to take part, after filling in a consent form, you will be asked a series of questions about your views on sharing your NHS/HSC health data for both clinical and research purposes. By ‘health data’ we mean any information collected about a person’s health including things like medical notes, blood test results, prescription information etc. collected by an appropriate health care professional. As well as asking about sharing health data, we will also ask you some questions about your physical and mental health and any health services you may have used, as well as some questions about you, for example your age and gender. The survey does not ask for any identifiable personal information, and at any time you may click the "prefer not to answer" box if you wish.
The survey has been tested and will take approximately 18-25 minutes to complete. The survey does not need to be completed at one sitting.
Your answers won't affect the way your own health information is managed.
What are the benefits or disadvantages of taking part in the survey?
There are no direct benefits or disadvantages to taking part in this survey nor are there any payments. However, the study team hopes the results of this survey can be used to inform and improve the way the NHS/HSC manage data for clinical and research purposes.
Do I have to take part?
No, taking part in this survey is entirely up to you. The consent form at the start of the survey asks for your permission to use your data, even if you decide not to complete all of the survey. Unfortunately, once data has been submitted it will not be possible for the study team to find and delete your answers as we are not asking for any personal details, making it impossible for us to retrieve and delete your individual answers.
How will the information I give be kept confidential? Where can I find out more about how your information is used?
No information that can identify you is being collected in this study. There is an option to leave an email address, should you wish to personally receive the results of the survey. Email addresses will be removed from the survey responses and stored on password protected computers at the University of Cambridge. Access to these email addresses will be by the study team only and will only be used to send you the final results of the survey. Once you have received the results you will be asked if you would like any further updates, for example any publications or posters that arise from the results of the study. If you decide you do not want any further information, we will delete your email address. If you would like further updates, we will keep your email address securely until we have sent you the final publications from the study, at which time point your email address will then be deleted from our records.
There is also an option to leave your postcode (or not) in the survey. The study team would like to look at whether there are any effects of geographical area on answers to the survey. Once the survey has closed the study team will convert all postcodes to a nationally available ‘code’ of the area you live in, and then delete your postcode. By doing this it will never be possible to identify you or the road that you live in, as one code is given to multiple postcodes in the same area. Whether or not you agree to give us your post code is entirely up to you.
Once the study team have finished using the de-identified data, they will make it freely available for public use via the University of Cambridge Research Data Repository (https://www.data.cam.ac.uk/repository). Please be assured that, as in the information above, any email addresses or postcodes given will have been deleted before this happens. There will be no way that anyone will be able to identify you from the data, but we hope that others may use the data to further understand the sharing of health data with the aim to improve mental and physical health.
You can find out more about how we use your information:
- at www.hra.nhs.uk/information-about-patients
- our leaflet from http://www.hra.nhs.uk/patientdataandresearch
- by sending an email to the University of Cambridge Data Protection officer at email@example.com
- by asking one of the research team
Who is conducting this survey?
This survey is being conducted by the CLIMB project study team based at the University of Cambridge in conjunction with a patient and public research advisory group. Funding for the study team is from the Medical Research Council's (MRC) Mental Health Data Pathfinder awards.
Who has reviewed this study?
This study has been reviewed and given a favourable opinion by members of the East of Scotland Research Ethics Service.
Where can I find the results of this survey?
Once the study has concluded and the results have been analysed, a report will be made available. If you have chosen to leave an email address this report will be sent directly to you. Results will also be published on the following websites: https://www.climbproject.org.uk/ and www.psychiatry.cam.ac.uk. You may like to note these down now before you move on or, alternatively, they will be displayed again at the end of the survey.
What if I have any concerns about this study?
The study team can be contacted in the following ways:
Mrs Linda Jones
Telephone (01223) 764670
Further contact details are available at: https://www.climbproject.org.uk/
Alternatively you may like to contact the CPFT's Patient Advice and Liaison Service (PALS) on 0800 376 0775 or email firstname.lastname@example.org. Please note PALS will not be able to give advice about technical queries with the study.
Thank you very much for reading the information sheet about the survey. If you would now like to take part in the survey, please read the following statements and tick the boxes to show that you agree. Please only take the survey one time (although you do not have to complete it in one go).
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