Frequently asked questions
Find answers to the most commonly asked questions. Choose from the list of topics from the menu.
Find answers to the most commonly asked questions. Choose from the list of topics from the menu.
Overview
What is Our Future Health?
Our Future Health will be the UK’s largest ever health research programme, designed to help researchers to discover new ways to prevent, detect, and treat diseases.
The aim is to build a community of up to 5 million people aged 18 and over, from across the UK, who will provide their health information to create a powerful national resource that could help everyone live longer and healthier lives.
Why is Our Future Health needed?
Despite advances in healthcare and medicine, large numbers of people in the UK still spend many years of their later life in poor health because of common diseases and health conditions. Currently, 59% of people aged 65 or older in the UK live with two or more serious health conditions. By 2035 that figure is expected to rise to 70%. [reference]
Healthcare systems have traditionally focused on treating people once they show symptoms of diseases. However, diseases often start in the body long before symptoms are detectable. It is a costly approach that leads to worse health outcomes.
With Our Future Health, researchers will be able to analyse data that will help them to identify more effective ways of tackling diseases. For example, they might discover a new test that detects cancer at an early stage, when it is easier to treat.
Why target up to 5 million people?
Few health research programmes have ever been attempted at this scale. The size of Our Future Health is a crucial factor in making it useful to researchers. We believe up to 5 million volunteers will give them the data they need to make important new discoveries. We all have something unique to contribute. To help all kinds of people, we need every kind of person to take part.
What do Our Future Health volunteers do?
When you decide to join Our Future Health we ask you to do the following.
- Read the participant information sheet and sign a consent form. This confirms that you agree to take part in our programme, and it explains everything involved in participating. For example, we ask your permission to combine the information you give us with your existing health records.
- Fill in an online questionnaire about your lifestyle and health. It should take around 30 minutes.
- Give a small blood sample. Your sample is taken by a trained member of staff. There are no home kits required.
- You may also have some physical measurements taken, such as your blood pressure, pulse rate, height and weight.
- You may also be invited to have a test to check your blood sugar using a finger-prick blood test.
Once you have signed up, we may contact you in the future on behalf of researchers to ask if you’d like to take part in additional studies. We also plan to offer volunteers the choice to receive feedback on their health or risk of disease.
How will I know that my data is safe?
We know that we are asking you to provide something highly personal for the sake of helping everyone to enjoy healthier, longer lives. So the security of your data is very important to us.
We will encrypt all the information that we collect about you and store it securely.
We will only grant access to researchers whose work passes our strict ethical and scientific criteria. And we will never sell your data to advertisers or insurance companies.
The data researchers can use will be ‘de-identified’. This means we will remove any information that could identify volunteers (such as your name, address, and date of birth) and store it separately from your health-related data.
How long will Our Future Health last for?
Our target is to build a community of up to 5 million volunteers by 2028. Researchers will be able to study our information beyond that date as they continue to seek new ways to prevent, detect and treat diseases.
Our volunteers will stay enrolled in Our Future Health for life unless they decide to leave. After a volunteer has died, the information they have contributed to Our Future Health remains part of the programme, unless they withdraw from the programme before they die.
How is Our Future Health different to other programmes, such as UK Biobank?
UK biobank has undoubtedly had a big impact on our understanding of risk factors for many diseases, but it had some limitations which Our Future Health now has the opportunity to address.
Diversity: Firstly, UK Biobank is not representative of the UK population today - which is now a truly multi-ethnic society with nearly 20% of the population being non-white. Despite efforts at the time to encourage Biobank to over-sample ethnic minorities, this was not adopted, for valid reasons, and the UK Biobank final sample only included ~6% /30K from ethnic minorities which is too small to study nearly all common chronic diseases - even in the major ethnic groups. It was also unable to reflect the UK population by deprivation and was skewed towards healthier, less deprived populations with about a sixth of the sample (80K) being from the most deprived groups of the population.
In contrast, Our Future Health is committed to ensuring that both those from ethnic minorities and more deprived backgrounds who have been under-represented in prospective cohort studies in the past will be better represented this time. We are taking a number of steps to help with this and in our first 8 months of recruitment, Our Future Health already has more participants from ethnic minorities and the most deprived groups than Biobank achieved in over 3.5 years. It is essential for both groups to be represented in this type of research in order not just to understand how risk factors of disease vary in these groups but also to understand their impact on outcomes and to reduce the health inequalities that we are all too familiar with.
Scale: UK Biobank was limited both in size (500K) and age (40-69) whereas the much bigger sample size in the Our Future Health will enable us to look at many more chronic diseases and particularly cancers, and the younger age eligibility will also enable us to look at diseases which start in younger adulthood including many mental health disorders and increasingly, diabetes - particularly in ethnic minorities.
Feedback: UK Biobank was not set up to provide individual level feedback to participants so there was no opportunity to use information collected to identify those at high risk of any diseases and give them the option to receive that information. Our Future Health has specifically been set up in order to do just that and to learn about how useful this can be – i.e. identifying those at higher risk at an earlier stage, giving feedback and intervening earlier in order to prevent, or at least delay the onset of, common chronic diseases.
Our organisation and funding
Who runs Our Future Health?
Our Future Health is being run by a charity of the same name, which has been set up to deliver the programme. The UK Government in partnership with the NHS supports the charity and research programme. Our partnerships with charities and industry are an important part of making Our Future Health a success, including providing part of the funding needed to set up and deliver the programme.
How is Our Future Health funded?
Our Future Health is a registered charity (charity number 1189681).
Our Future Health is a collaboration between the public, charity and private sectors. We have funding from UK Research and Innovation (UKRI) – the UK Government-funded body that invests in science and research, and support also comes from companies that make medicines, equipment used in healthcare and charities.
We have a full list of funders and how they are involved in Our Future Health on our website. Researchers who are approved to conduct research using Our Future Health, will also contribute to the programme’s running costs.
Who has approved/regulates Our Future Health?
The Our Future Health research programme has been reviewed by a number of external experts and groups and has been approved by the Cambridge East Research Ethics Committee. Learn more about our governance.
Joining the programme
Why am I being invited to take part?
We are inviting people aged 18 and over from all backgrounds and ethnic groups, all across the UK, to be part of Our Future Health. Because to help all kinds of people, we need every kind of person.
You may have been contacted because you are an NHS patient in a region where we are inviting people to take part in Our Future Health. We are working in partnership with NHS England to invite people to join our research programme. Our mailing partner, Whistl, who work closely with Royal Mail to deliver non-personalised letters to households in areas near our clinics may have also contacted you.
Our Future Health is also working with NHS Blood and Transplant to offer the opportunity to blood donors to take part. The benefit of working together is the opportunity to build this new research programme simply and efficiently whilst people are already giving blood.
You may have been contacted because you are a Boots customer in a region where we are inviting people to take part in Our Future Health. We are working in partnership with Boots to give people the opportunity to join the research programme.
Who can join Our Future Health?
Everyone aged 18 and over living in the UK is eligible to join. If there isn’t a clinic near your where you live, you can register now then join later when a clinic is open in your area. Anyone who is interested in joining the programme should visit our website for more information.
Can I participate in Our Future Health if I am pregnant?
You can participate in Our Future Health at any time. It’s better if you wait until at least 6 weeks after your pregnancy to book or attend an appointment. Most of the physical measurements you'll have are affected by pregnancy, such as blood pressure, and waist circumference. These measurements will not give an accurate picture of your standard, non-pregnant self. If you attend an appointment, clinical staff will take only those measurements you're comfortable with. You can still donate a blood sample because pregnancy does not affect this.
Will there be future opportunities to sign up if I don’t do it now?
Yes, there will be several opportunities to join Our Future Health over the next few years if you can’t join now.
If you’re interested in volunteering, you can register your consent and complete your health and lifestyle questionnaire. We will notify you when appointments are available at a location near you.
I can't participate or book an appointment now. Can I do it later, or is there a deadline?
There is no current deadline for registering with the programme, or for booking and attending your appointment. If you're interested in volunteering, you can register your consent and complete a questionnaire while you wait for a suitable clinic location. The information from your questionnaire is really valuable in helping us build a detailed picture of people's health.
We will announce any new locations on our website and social media.
What are the benefits of taking part?
Joining Our Future Health is, first and foremost, an act to help others. You will be giving your time and data for free to help researchers make discoveries about human health and disease. We are confident that this will benefit future generations, helping people to live in good health for longer. We are also looking to offer feedback based on volunteers’ health information if they wish to receive it.
What health information will I receive when I sign up?
In the future, we may contact you to offer you some information about your health arising from your samples or data. If we do get in touch for this reason, we will give you more information and the chance to ask questions. You can then say yes or no.
How have people been chosen to take part?
A wide range of people aged 18 and over in particular regions are being invited to join Our Future Health. You may have been contacted because you are an NHS patient, a blood donor, a Boots customer or if you are living near one of our clinics.
Can I join if I have an existing health condition?
Yes, everyone aged 18 and over living in the UK is eligible to take part.
How can you join if you don’t have internet access?
At the moment the only way to register as a participant via our online registration form. We understand that not everyone in the UK has access to the internet. We are currently working on developing alternative ways to take part.
Do I have to join Our Future Health?
No, you are free to choose whether you want to join. But our ultimate aim is that millions of people right across the UK will take part and help to build one of the most detailed pictures we’ve ever had of people’s health.
Taking part
What does taking part involve?
If you join Our Future Health, we will ask you to:
- read some information about the programme
- sign a consent form to confirm that you would like to participate
- provide a sample of your blood
- have some physical measurements taken, including blood pressure, pulse rate, height, and weight
- complete a questionnaire about yourself
- allow us to link to and analyse health records about you
- allow the information you have provided (not your name or your contact details) to be studied for health research
You may also be invited to have a test to check your blood sugar using a finger-prick blood test.
What happens after I’ve completed the questionnaire and provided a blood sample?
That’s all we need at this stage.
In the future, if you agree, we may contact you about other aspects of the programme.
For example, we might:
- send you news and updates about the research programme
- ask you about your experience
We might also:
- ask you to complete another questionnaire
- ask your permission to collect health-relevant information about you from other sources
- invite you to attend an appointment to give a (further) blood sample
- invite you to attend an appointment for other assessments, such as medical imaging
- ask if you would like to receive personal information arising from your samples or data
- invite you to take part in other research studies
How long will I be involved for?
Our Future Health is a long-term research programme. We hope to collect as much information as we can about people’s health as they age so researchers can look back to find earlier signs or predictors of common diseases. That’s why, if you decide to take part, we would like to be able to keep up to date on your health over your lifetime, via your health records. We may also continue to use your data in research after you die. You can withdraw from Our Future Health, or reduce your involvement, at any time.
What happens to my data after I die?
After you die, the information you have contributed to Our Future Health remains part of the programme, unless you withdraw from the programme before you die. Even after you have passed away, your data continues to be valuable to help the prevention, detection and treatment of diseases.
Can I leave/opt out of Our Future Health?
You can withdraw from Our Future Health, or reduce your involvement, at any time.
If you would like to stay in the programme but do not want to hear from us, you can change your contact preferences on the Our Future Health website.
If you want to leave you can choose between 2 options.
Partial withdrawal means we will not contact you again, or get any further information from your health records, but we can still analyse the samples and data you gave before you withdrew.
Full withdrawal means we will not contact you again and we will destroy the data and samples we collected from you, besides from an audit record to say that you were once part of the project. However, it won’t be possible to remove your data from any research that was done before you withdrew. You can find out more information in our privacy notice.
Why have I received a reminder email/how do I opt out of these?
If you would no longer like to be contacted about Our Future Health, please let us know by emailing support@ourfuturehealth.org.uk and we will ensure you receive no further communications from us.
Joining through a pharmacy
What role is Boots playing in Our Future Health?
Pharmacies such as Boots are one of several ways that people will be able to join Our Future Health. Boots will be raising awareness of the programme and allowing participants to book an appointment to join the programme, with appointments available in selected stores.
Will Boots have access to my data?
Boots will not receive any data from Our Future Health about people who join the programme. Boots will not have access to participant’s health data or NHS records.
Is Boots sharing customer data with you?
Our Future Health will not receive any customer data from Boots. We will only collect information from people if/when they decide to join Our Future Health as part of our sign-up process.
Which Boots stores are involved?
We have a growing number of clinics in Boots stores open across England. We are opening new clinics as the programme expands.
Find out what stores have an Our Future Health clinic
I’m not a Boots customer, can I still sign up?
Yes, Boots is just one of the ways that you can join Our Future Health. You can receive the latest updates on our roll out by signing up to our newsletter.
Can I bring a friend/family member to the appointment?
Yes, you can bring a friend or family member to your appointment for support if needed. Due to limited space, we ask that you do not bring children to the clinic. We do understand that sometimes care arrangements can be difficult to arrange, so please feel free to change your appointment time using the online dashboard if necessary.
NHS invitation letters
Why have I received an invite letter?
Our Future Health asked NHS England to invite people aged 18 and over and who live in selected areas of England to join the research programme. NHS England holds this information from records that health and social care providers in England keep about the care and treatment they give.
We are working in partnership with the NHS DigiTrials service to send people invitation letters to join Our Future Health. NHS DigiTrials is a service run by NHS England. It offers data services to support research studies to help reduce the time, effort and cost of developing new drugs, treatments and services, bringing benefits to patients, the public and the NHS. It allows NHS patients to receive invitations to join research programmes such as Our Future Health, unless they have opted out.
You may also have been contacted through our mailing partner, Whistl, who work closely with Royal Mail to deliver non-personalised letters to households in areas near our clinics.
Does Our Future Health have my data?
No. NHS England arranged for this invitation to be sent using a secure and trusted printing and postage company. Your data has not been shared with Our Future Health. The printing and postage were paid for by Our Future Health.
Who gave permission for me to be sent this letter?
NHS England received legal permission to invite people from the Health Research Authority, who themselves received advice from an independent body called the Confidentiality Advisory Group. This permission comes under Regulation 5 of The Health Service (Control of Patient Information) Regulations 2002.
I don’t want to be contacted – how do I opt out from being sent a letter?
If you have previously opted out of sharing your health data for planning and research purposes by submitting a National Data Opt-out, we will not send you a letter inviting you to take part in Our Future Health. If you do not want to receive a letter inviting you to take part, you can opt-out of Our Future Health.
Why have I been sent this letter if I have signed up before?
This invitation was sent to randomly selected adults living in specific areas of the UK. If you have already registered to volunteer, please ignore this letter. If you have previously registered and chosen to withdraw, Our Future Health has disposed of your data in accordance with your wishes so please ignore this letter. Our Future Health does not hold any of your personal data at the time of this invitation.
The questionnaire
What is the questionnaire for?
To identify the earliest signs of common diseases, we need to understand differences in peoples’ health and lifestyles, as well as their genes. The questionnaire provides us with this information. It includes questions about your lifestyle, past medical history and family history.
How long does it take to complete the questionnaire?
The questionnaire should take between 35 and 50 minutes in total, but you don’t have to complete it all at once. You can do a little at a time.
What happens if I can’t answer all the questionnaire?
If you need help completing the questionnaire, we’re here to help.
You don’t have to answer every single question. But the more information you provide, the better. By combining comprehensive and complete information from all volunteers we’ll be able to support more discoveries that could improve the health of future generations.
Can I ask someone else to answer the questionnaire for me?
No, but if you need help completing the questionnaire, we’re here to help.
Providing a blood sample
Why do you need a sample of my blood?
When you provide a blood sample, we will measure natural substances in your blood called ‘biomarkers’. Researchers might find that a common or rare biomarker turns out to be a useful indicator of whether people will develop certain diseases in future.
Blood also contains DNA. DNA contains lots of tiny variations (or ‘variants’) that contribute to many of the differences between people. We know that some variants can influence a person’s risk of developing certain diseases – they might reduce our risk, or increase it.
Individually, each of these variants may have a tiny effect on our likelihood of developing a disease. But combined together, the presence of several variants in our DNA may increase or decrease our risk by quite a lot. The calculation of this combined effect is sometimes called a genetic risk score. These are not used widely in healthcare yet, and it’s not clear how useful they are compared to traditional risk factors.
In Our Future Health, we may calculate your estimated genetic risk scores from the combination of variants we find in your DNA. This could help to reveal how accurate these scores are in predicting disease in later life, and therefore whether they could be used to improve healthcare in the future.
How do I provide a blood sample?
A trained member of staff will collect your blood sample. The invitation you receive will give clear instructions on how to find out more and book an appointment and location from available slots. This could be at a local clinic, pharmacy or pop-up site.
What if I can’t give a blood sample now?
You can book an appointment in advance to give your blood sample at a time that is convenient for you.
I’m having issues with making a booking - what should I do?
If you need help with making a booking, please contact support@ourfuturehealth.org.uk or 0808 501 5634 (freephone) where our team will be happy to assist you.
What happens to my blood sample?
The samples will be stored as directed by the Human Tissue Act. Blood will be frozen and stored for future analysis. The storage and analysis of all blood samples will be done at established research facilities.
Can you give me my blood test results?
Please see What will I find out about my health or risk of disease?
What facilities are available at the clinics?
Different Our Future Health clinic locations have different facilities on site or nearby. Most clinics don’t have a toilet for volunteers on site, but many have these facilities at nearby supermarkets or shopping centres.
What time should I arrive for my appointment?
Please arrive 5 minutes before your appointment to ensure the clinic runs smoothly and that the waiting area doesn’t get too busy. If you are more than 5 minutes late for your appointment, you may be turned away.
Changes to cholesterol tests
From the end of 2024 we will no longer be using finger-prick cholesterol tests during Our Future Health clinic appointments. But if you book and attend an Our Future Health clinic before the end of December you will still have the option to have a cholesterol test for research and receive the result following your appointment.
Why will Our Future Health no longer be using finger-prick cholesterol tests?
We are making this change following the recent decision by the Department of Health and Social Care to switch from using finger-prick cholesterol tests in the new NHS Digital Health Check to a laboratory cholesterol test. We also listened to views on our cholesterol testing from GPs and Our Future Health volunteers before deciding to make this change.
Will Our Future Health volunteers learn anything about their cholesterol once finger prick tests are stopped?
Volunteers attending an Our Future Health clinic appointment after the end of 2024 will not be given a cholesterol test at their appointment. We are currently exploring alternative ways to measure cholesterol and how to provide that information back to volunteers – and we will make a decision in the next few months. Our priority will always be to make sure Our Future Health is as valuable as possible for health researchers to discover new ways to prevent, detect, and treat diseases.
Does this change affect all Our Future Health clinics?
This change will affect all Our Future Health clinics.
Volunteers joining Our Future Health via NHS Blood and Transplant will not be impacted by this change, as these volunteers don’t have a cholesterol measurement taken.
I booked my appointment before the change was introduced so does this mean I will not get a cholesterol measurement at my appointment?
Appointments taking place in Our Future Health clinics before the end of 2024 will still include a cholesterol test. Cholesterol tests will not be part of clinic appointments from the end of 2024.
If I have already had my appointment, was the finger prick cholesterol test I had accurate?
Measurements taken at the appointment, including the finger-prick test for cholesterol are for research purposes only and not for clinical or diagnostic purposes. Finger-prick tests and those done in NHS laboratories are different and do not produce the same results in about 1 in 10 tests. This also means that around 9 in 10 people's cholesterol levels from finger-prick tests are very similar to those from laboratory tests. Since these finger-prick measurements are for research use only and are not intended for clinical use, any differences in cholesterol levels do not present a risk to your health. The results are shared with you so that if the cholesterol reading is high, you can take steps to reduce it by making changes to your lifestyle, for example through diet and physical activity.
£10 voucher
How can I become eligible for a voucher?
You will be offered a £10 voucher to recognise your time and effort. To become eligible for a voucher you must:
- sign-up to Our Future Health
- attend your appointment, including agreeing to donate a blood sample
- complete the health and lifestyle questionnaire
You can only claim a £10 voucher once, unless you are specifically offered a second voucher at Our Future Health’s discretion. Repeat claims will be rejected.
Our Future Health reserves the right to withdraw the voucher scheme, now and in the future.
How do I claim my voucher?
You should receive receive an email directing you to your Our Future Health account. If you don't have this in 24 hours after you complete the taks check your junk folder. Here you will be able to choose to either claim the voucher or donate it to Our Future Health. If you choose to claim the voucher you will be directed to the Voucher Express site, where you can choose the voucher you would like from the list of available retailers.
How long do I have to claim my voucher?
After you have been offered the voucher you will have 14 days to accept or donate the voucher. Any vouchers not claimed within this time period will automatically be donated and you will no longer be able to claim it.
How long do I have to choose a retailer once I have claimed my voucher?
You will have 31 days to choose a retailer on the Voucher Express website. Any voucher not activated by selecting a retailer within this time period will automatically be donated and you will no longer be able to claim it.
Where can I spend the voucher?
You can spend the voucher in places like supermarkets, high street shops and online retailers. Over 100 brands are available on Voucher Express. The full list can be found on the Voucher Express website.
I don't shop at the places my voucher can be used. Can I swap it?
These vouchers can be used with over 100 UK brands, so we hope that most volunteers will find them useful. Unfortunately, we are not able to exchange them for a different type of voucher.
How do I donate my voucher back to the programme?
You will receive an email directing you to your Our Future Health account. Here you can choose to either claim the voucher or donate it to Our Future Health. If you choose to donate the voucher, this will support the work of Our Future Health in helping people live longer and healthier lives.
Can Gift Aid be applied to the donation of a reimbursement voucher back to Our Future Health?
No. Gift aid only applies to personal voluntary donations of money to a charity by eligible individuals, or through the sale of goods donated by eligible individuals to charity shops through the retail Gift Aid scheme.
The voucher doesn’t fully compensate me for the cost of travelling to the clinic appointment. Can you offer cash payments instead?
We understand that the voucher may not fully compensate everyone for the costs of travelling to their appointment, but we hope it helps offset some of the costs incurred. We are sorry but we cannot offer cash payments.
Where can I find out more information about the reimbursement vouchers?
Your invitation letter contains some information about the reimbursement vouchers. You can also find out more information by signing in to your Our Future Health account on the website, or by emailing support@ourfuturehealth.org.uk
I joined Our Future Health via NHS Blood and Transplant, will I receive a voucher?
Currently, we are not able to offer reimbursement vouchers to participants who have joined Our Future Health through NHS Blood and Transplant. We are sorry for any inconvenience or disappointment caused.
Where can I find out more information about the vouchers?
By signing in to your Our Future Health account on the website, or by emailing support@ourfuturehealth.org.uk
Privacy
How did you get my contact details?
We are working with partners to invite people to join the Our Future Health programme. You may have been contacted by NHS England, Boots or by NHS Blood and Transplant. Your address may have received a non-personalised letter via our mailing partner Whistl, who work closely with Royal Mail, but these providers do not hold personal contact details.
Who will get access to my information and samples?
We at the Our Future Health charity will be responsible for your data and samples and will control who has access to them. Looking after your privacy and the security of your data is of critical importance to us. We will never allow access to your data for anything other than for health research that is for the public good.
Registered researchers will apply to conduct studies using Our Future Health data and samples via an access process. They will access data for their research via a trusted research environment, where researchers can work with data, but have very strict controls on what data they can take away. These controls limit what data can be removed, in order to minimise the risk that an individual can be identified.
These researchers might be from charities, universities or companies involved in health research. The researchers may be in the UK or in any other countries that work to our standards. All research applications, whether from funders or researchers at universities, government, the NHS, charities or companies, will be reviewed in the same way and held to the same standards. Our industry partners have no preferential access to the data compared to researchers from the NHS, academia, government, etc.
Will researchers make money from my data?
Researchers may profit from discoveries they make using Our Future Health resources. Our industry partners have agreed to make reasonable efforts to ensure that innovations developed using our resources are made available in the UK to benefit NHS patients.
Will you share my personal information with anyone else?
Identifiable data, such as your name, address and date of birth, will be removed from your samples, extracted DNA, and health-related data, including genetic data, and stored securely and separately.
A limited number of staff at Our Future Health will have access to your personally identifiable data, so we can contact you.
We will need to share some of your identifiable data (for example, your name and address) with a third-party processor, for example to get access to health-related records about you that are stored by NHS bodies. But we will only share what is absolutely necessary, and strict controls will be in place to protect your personal data.
Registered researchers conducting studies that involve re-contacting volunteers (for example - to collect more information or samples), will be given your name and contact details only if you give your permission.
We will never allow access to your data for anything other than for health research that is for the public good. We will never sell or provide your personal identifiable data for the purposes of advertising or, for example, to insurance companies.
Have you got access to my health records?
If you decide to take part, we will ask your permission to access information about you held by the NHS. This could include data from hospital and GP records, medical notes, and even images - for instance if you’ve ever had an MRI scan or X-ray.
We would like your permission to go on collecting relevant data from your records as the programme goes on, for many years. In the future we might wish to collect other types of data, from other sources, but we will always ask you first.
Why do you need to access, link and analyse my health records?
This helps us identify events related to your health, such as being diagnosed with a disease by your GP or an admission to hospital. It will allow us to investigate if there are any aspects of your health, lifestyle or variations in your genes that made the event more or less likely.
Linking to your health records will help us collect your health information for years after you first enter the programme, including detail that we cannot collect from blood samples or a questionnaire, such as X-ray or scan results.
Will you tell anyone else that I am taking part?
Only a limited number of staff at Our Future Health will have access to your personally identifiable data, so we can contact you.
There are some instances where we will need to share some of your identifiable data (for example, your name and address) with a third-party, for example to access health-related records about you that are stored by NHS bodies. We will only share what is absolutely necessary, and strict controls will be in place to protect your personal data.
Approved researchers may wish to contact you about studies that require more information or samples to be collected. We will always ask you first, and only give them your name and contact details if you give your permission. We will never allow access to your data for anything other than health research that is for the public good.
Security
How will my data and information be protected?
We will store and manage your data securely and to the highest industry and professional standards, in compliance with data protection laws.
Full details of where and how we store your data is in our privacy policy. We publish a current record of where the data is stored, and who processes it, on our website.
All the information we collect about you will be encrypted and stored according to strict security standards.
Identifiable data, such as your name, address and date of birth, will be removed from your samples, extracted DNA, and health-related data, including genetic data, and stored securely and separately.
Where will my information be stored?
The storage and analysis of all blood samples will be done at accredited research facilities.
We will store and manage your data securely and to the highest industry and professional standards, in compliance with data protection laws. Full details of where and how we store your data is available in our privacy policy. We publish a current record of where the data is stored, and who processes it, on the Our Future Health website.
Your de-identified samples, extracted DNA, and health-related data, including genetic data, could be sent to approved processors that meet our quality and security standards outside the UK for analysis.
What happens to my information if I leave?
You can withdraw from Our Future Health, or reduce your involvement, at any time. There are 2 options.
- Partial withdrawal means we will not contact you again, or get any further information from your health records, but we can still analyse the samples and data you gave before you withdrew.
- Full withdrawal means we will not contact you again and we will destroy the data and samples we collected from you, besides from an audit record to say that you were once part of the project. However, it won’t be possible to remove your data from any research that was done before you withdrew.
How long will you keep my information and sample?
Our Future Health will run for a very long time. We hope to collect as much information as we can about people’s health as they get older, so researchers can look back to find the earliest signs of diseases.
That’s why, if you decide to take part, we would like to be able to keep track of your health for the rest of your life, using your health records. Researchers may continue to use your data in studies, even after you die, or if you lose mental capacity.
Research using Our Future Health
How will the research improve public health?
The breadth and detail of Our Future Health information will make it a world-leading resource for health research. It may hold the key to huge numbers of discoveries, such as:
- new ways to detect diseases much earlier than is currently possible, leading to new or improved screening and prevention programmes and earlier treatment
- new ways to predict with better accuracy who is at higher risk of diseases and would benefit from faster access to screening and prevention interventions
- more targeted or personalised treatments, tools and technologies to delay the onset of disease, or change the course of disease progression, to reduce disease risks and more targeted ways to investigate diseases for people at higher risk
What sort of research will be done?
Researchers can apply to access Our Future Health for 2 kinds of research.
- Research that only uses the data and samples collected by Our Future Health. Some approved research studies will search for patterns in the data or samples collected by Our Future Health, to reveal clues about human health and disease. The data you provide to Our Future Health could contribute to making these discoveries.
- Research that involves re-contacting volunteers in Our Future Health. Some approved research studies will need to build on the data collected by Our Future Health. They will need to contact volunteers to do this, but we will never give your contact details to researchers without your permission.
Who will do the research?
Some of the research will be done by researchers at Our Future Health, but most of it will be carried out by other researchers. These researchers might be from universities or companies involved in health research, such as pharmaceutical and health technology companies.
Approved researchers will be able to apply to do research studies with the data and samples, or ask to contact volunteers from Our Future Health. We will have a clear process in place to confirm the identity and credibility of researchers and their research organisations who apply to do research with Our Future Health.
Who will decide what research can be done?
An Access Board, including experts and members of the public, will carefully review every application. They will only approve health-related research that is for public good and that comes from legitimate researchers.
Will I be asked to take part in additional research?
Some approved research studies will build on the data and samples collected by Our Future Health. The researchers conducting these studies will need to contact volunteers to do this. For example, to ask for further information or samples, invite them to join a clinical trial of a new medicine, or to test new ways to detect disease early.
We might contact you about taking part in a study like this. If we do, we will give you some information about it, and you can then say yes or no to receiving further information.
If you say no, we will not contact you again about that study. If you say yes, we will give your contact details to the researchers, and they will get in touch with you. You can then choose whether or not to take part in the study. If you say no at this stage, they will not contact you about the study again.
We will never give your contact details to researchers unless you give us your permission.
Information about your health
What will I find out about my health or risk of disease?
In the future, we might get in touch to ask if you would like to receive personal results from your samples or your data. If we do get in touch for this reason, we will give you more information and the chance to ask questions. You can then say yes or no.
Will I be able to see the information you have collected about me?
Personal data and results will be offered and made available to Our Future Health volunteers. But we are not planning to provide you with results from your samples just yet.
What type of genetic analysis will you do?
When you provide a blood sample, we will extract DNA (genetic information) from it. DNA contains lots of tiny variations or ‘variants’ that contribute to many of the differences between people. Some of these variants influence a person’s risk of developing different diseases. Some DNA variants are common, and some are rare.
We will run a test called SNP (pronounced ‘snip’) array to look at your DNA – this is a technology that looks for some specific areas in your DNA, but does not look at the whole genome.
There are also other technologies that read DNA sequences. For example, genome sequencing reads and records almost all the DNA in your genome (your complete set of DNA) including both common and rare variants. We might use these other technologies to look at your DNA.
We will store your samples and DNA for future research. Over the coming years, if you have provided a blood sample, researchers will be able to conduct studies using the same sample and data you have provided to develop new diagnostic tests, medications and scientific discoveries.
Can I download my genetic data?
It won’t be possible to download your genetic data. However, in the future, we might get in touch to ask if you would like to receive personal results from your samples, or your genetic data.
Contact and complaints
How do I contact Our Future Health?
If you need to contact us, visit our help and support page.
How often will you be contacting me?
We would like to contact you a few times each year to keep you updated with the Our Future Health programme. After you sign up, you can use the ‘my account’ page on the website to change your contact preferences.
How do I raise a concern or make a complaint?
If you have a concern about any aspect of this research programme, please contact us by email at complaint@ourfuturehealth.org.uk or phoning 0808 501 5634.
NHS Blood and Transplant (NHSBT)
How will NHS Blood and Transplant know I’ve consented to the study?
We will let NHS Blood and Transplant know that you have signed up to Our Future Health, and they will make a note on your donor record, so it flags up next time you go to donate blood. This note will remain on your record until your Our Future Health blood sample is collected, or if you decide to withdraw from our programme.
What will happen at my next blood donation appointment?
The staff at the donor centre will be able to see a note on your record if you have joined Our Future Health. If you pass the health screening, they will ask if you are happy for your Our Future Health blood sample to be collected from your donation that day. If you agree, they will collect 2 tubes of blood from your donation pouch. The samples will later be transported to our processing and storage facility.
Due to operational constraints (for example if a donation session is running behind schedule), it might not always be possible to collect your Our Future Health sample at your next donation session, but the note will remain on your record, so the sample can be collected at another future donation.
I am a blood donor and I have already signed up to Our Future Health, can I give my Our Future Health sample at my donation session?
At the moment, you can only give your Our Future Health samples through your NHS blood donation if you have joined Our Future Health via email invitation directly from NHS Blood and& Transplant. So if you have signed up another way (for example, by searching for Our Future Health online, or by scanning a QR code) you will only be able to give your Our Future Health sample by booking an appointment online at one of our community clinics.
I joined Our Future Health via NHS Blood and Transplant, will I receive a voucher?
Currently, we are not able to offer reimbursement vouchers to participants who have joined Our Future Health through NHS Blood and Transplant. We are sorry for any inconvenience or disappointment caused.