FAQ following OFH announcement
Our Future Health
You may have seen a new research project announced recently called Our Future Health which is starting to invite people to participate – much like we did about 15 years ago in UK Biobank. Our Future Health is funded by the Government, charities and pharmaceutical industry and aims to assess the detection, prevention and treatment of disease in the NHS.
We are supportive of this new project, which is complementary to UK Biobank. It will build on the work of UK Biobank which has successfully demonstrated how to establish large long-term population studies in the UK and allow researchers around the world to use de-identified information about the participants to make important discoveries about ways to prevent and treat disease. UK Biobank’s success is of course down to you, the half a million participants who generously agreed about 15 years ago to make information about yourselves available for health-related research.
Our Future Health does not know that you are already a participant in UK Biobank, so you may receive a letter from the Our Future Health team asking you to join the project. However, it will be far more scientifically beneficial for both studies if they include different people.
Having separate participants in each study will allow for the tools being used in the NHS generated through the use of UK Biobank to be tested independently through the work of Our Future Health. Consequently, although people are free to participate in both studies, the leadership of both UK Biobank and Our Future Health would prefer the participants in each study to be different.
You can read more about the Our Future Health project here: https://ourfuturehealth.org.uk/millions-of-invitations-go-out-this-autumn-for-uks-largest-health-research-programme/
If you have any questions about how Our Future Health relates to your participation in UK Biobank please read our FAQs below or contact UK Biobank’s Participant Contact Centre on 0800 0 276 276.
Our Future Health is a study funded by the Government, charities and the pharmaceutical industry, which aims to assess the detection, prevention and treatment of disease in the NHS, and to recruit people into clinical trials based on particular characteristics (such as the results of genetic tests). It is currently inviting individuals to join the study and provide health data and blood samples.
Our Future Health builds on the work of UK Biobank, which has successfully demonstrated how to recruit hundreds of thousands of individuals from the general population into a research study and demonstrated the importance of large-scale studies in enabling scientific discoveries to improve our understanding of the causes, treatment and prevention of disease.
As a consequence of UK Biobank’s success, many other studies, like Our Future Health, are being established to help in this endeavour. We have helped Our Future Health with its planning.
UK Biobank is set up solely for health-related research. Our Future Health is embedded more closely within the NHS to see whether such research findings can be translated into clinical practice.
UK Biobank is 15 years ahead of Our Future Health in its development, and it is already enabling significant discoveries into the diagnosis, treatment and prevention of a wide range of diseases.
When you signed up to UK Biobank, you did so on the understanding that none of your individual results (for example, from genetic or biomarker tests) would be returned to you. UK Biobank does not provide such “feedback” to participants because, although there is the possibility that it may be beneficial (for example, by identifying a treatable condition early), it may inadvertently cause harm (for example, by leading to unnecessary investigations and invasive procedures that are harmful).
Although UK Biobank does not share individual results with participants, we do regularly update you on the ways in which your data are allowing many major scientific discoveries to made.
By contrast Our Future Health will use information about participants (for example, relating to their genetic risk of developing certain traits or diseases) to invite them to join drug trials being run by pharmaceutical companies, as well as to assess the value of using these data within the NHS. It is trying to work out how to do this in a way that benefits the public and does not disrupt the NHS.
No, Our Future Health is an entirely separate study from UK Biobank.
It will be far more scientifically beneficial for both studies if they include different people. This is because one of the main aims of Our Future Health is to assess the use by the NHS of the many data-driven tools that have been developed by UK Biobank (e.g., genetic risk scores for certain diseases), so the people in the two studies need to be separate from each other to have maximum value.
Consequently, although people are free to participate in both studies, the leadership of both UK Biobank and Our Future Health would prefer the participants in each study to be different.
No, you do not have to leave UK Biobank in order to join Our Future Health (or any other study). Of course, you can withdraw your consent from UK Biobank at any time, but it is not necessary in order to participate with Our Future Health, and there would be no benefit in doing so.
Only if you are a participant of both studies. In this case, UK Biobank will not share any data at the point of recruitment into Our Future Health. However, there could potentially be data sharing between the two studies in the future for participants who are in both.
Our Future Health aims to recruit 5 million participants over the next few years, but it will take many years for the resource to gather anywhere near as much health outcome data as UK Biobank. Also, it is likely that the detail of the information about participants in UK Biobank will always be far greater than in the much larger, but less detailed, Our Future Health Study.
UK Biobank is currently the most valuable asset to the scientific research community around the world due to its scale and breadth, and the 15 years’ worth of follow-up information that have been generously shared by you. As such, it will always remain at least 15 years ahead of any new study – such as Our Future Health – that is being set up now.
Yes, UK Biobank is very supportive of this new resource which will eventually help in the prevention and detection of disease, and is complementary to major studies like UK Biobank which is at a more advanced stage of its development.