You are being invited to participate in a research study conducted by the Health Informatics Group at Swansea University.
The purpose of this research study is to gauge the general public's opinion about the use of anonymised data for medical research. Your participation in this study is entirely voluntary but once you have submitted your survey response it will not be possible to withdraw your information. You are free to pass on any question.
Every day the world creates 2.5 quintillion bytes of data. This data comes from everywhere: doctor visits, traffic cameras, posts to social media sites, digital pictures and videos, shop loyalty cards and mobile phone GPS signals to name just a few.
To improve our health and wellbeing we must understand how our body and environment works. To do this, researchers from the Health Informatics Group use some of the routinely collected data which has been anonymised (had all of its identifiable details including name, address, date of birth removed) to identify trends in health and wellbeing to get a clearer picture of how improved housing conditions can affect a person's wellbeing. This research does not identify individual patients, healthcare in a specific region or healthcare at a specific time of year.
The work carried out by our researchers is all done to benefit the health and wellbeing of the Welsh population. For example, the research could advise ways in which to improve disease diagnosis and enhance a service's delivery. To ensure the work which we do remains relevant to the Welsh population and we continue to promote a transparent and balanced view of the benefits of using public health and other data for research; we need your advice!
By participating in Data; the BIG Question Survey, you will be making a difference to the research which will be informing our health and wellbeing services.
When you agree to take part, you will be asked to answer some questions about yourself, and some questions about your opinion of the use of anonymised data for medical research. These will be in sections:
It will take around 5 minutes to complete the survey. All questions are optional, so you can skip any of the questions which you don't want to answer.
By completing Data; the BIG Question Survey you will be advising Swansea University's Health Informatics Public Engagement and Communications Team on how best to promote a transparent and balanced view of the benefits of using public health and other data for research to the Welsh population. Maintaining a strong relationship between researchers and the public means we can all work together to make a much healthier and informed tomorrow.
All of your survey responses are anonymous. We believe there are no known risks associated with this research study. To the best of our ability your answers in this study will remain confidential. We will minimise any risks by following the standards set out in the Data Protection Act 1998, the Caldicott Review and Good Clinical Practice Guidelines.