What does joining involve?
Joining simply involves clicking the link in your text message invitation and completing the online enrolment form. Alternatively, you can sign up online here.
If you join, this means you will allow:
Heartburn Health to collect health information from your NHS records and check that your personal details are correct
Heartburn Health to contact you about future approved studies.
The use of your non-identifiable health information in approved
studies, including studies you have not been contacted about.
Heartburn Health to share regular updates about the programme and diet and lifestyle advice for living with heartburn.
Joining Heartburn Health is completely your choice.
What information will we collect?
We will collect your health information now to use in future research studies.
The type of information we collect about you may include clinical visits, test results, treatments and procedures related to the oesophagus, acid reflux, and conditions potentially related to acid reflux like those listed here. We may collect this information directly from NHS England or other central UK health service bodies.
We may also ask questions about you, your health and wellbeing in surveys.
Information collected about you from NHS England or other central UK health service bodies and surveys may be combined to better answer research questions to improve the health of people with heartburn, indigestion and acid reflux. Identifiable data may also be shared with NHS England or other UK health service bodies to access relevant health information from your NHS records for research purposes.
Future research studies
Some future research studies may invite you to provide further information (e.g. answer more survey questions or provide samples like blood) or try something new (e.g. new diet, new test, new treatment).
The Heartburn Health team will always contact you first about these future studies. Full details will be shared when you are invited to take part. It will be entirely your choice whether to agree to these invitations. The information held about you in Heartburn Health may still be used to support these studies even if you decide not to take up the invitation.
How will the research work?
All studies will need university or NHS Health Research Authority (HRA) ethical approval.
Future studies may be run by the Heartburn Health team or other researchers from academic (university), non-profit and for-profit (commercial) organisations from countries around the world. Studies run by other researchers will need both ethical approval and approval from the Heartburn Health Access Board.
Approved studies will use your non-identifiable health data to answer specific research questions. Your non-identifiable data may be used even if you are not contacted about a study.
The Heartburn Health team may contact people on behalf of some approved studies which would like to collect new information or test something new. You may be selected based on information about you, such as your age, lifestyle habits, location or health conditions.
You may not be contacted because you are not suitable, there are resource limits, or you may be in the comparison group. Comparison groups allow researchers to compare the data of people offered something new (like a drug or test) with people who are not, to see if it makes a difference. You may be selected for the comparison group at random.
Only the Heartburn Health team will be able to access your personal details (e.g. name, email address, NHS number). Your data is strictly for health research.
Find out more about how we will keep your data safe.
Full details
Heartburn Health will be a powerful tool to speed up research into care for
people with heartburn, indigestion and acid reflux. You can find full details about Heartburn Health in the Participant Information Sheet (PIS).