Understanding and describing the non-medical out of pocket cost of a hospital admission to families and guardians - Patient Information Leaflet

1. Chief investigator: Prof. Michael Levin
Principal Investigator: Dr Marieke Emonts
Search Participant information sheet – parents & guardians
Introduction
We are inviting you as a parent or guardian to take part in a research study. The study will involve
you completing a short online survey identifying and estimating the personal non-medical costs
of your child’s admission to the family. Before you decide whether to take part, it is important
for you to understand why the research is being done and what it will involve. This information
sheet is for you to keep. Please take your time to read this information sheet and ask us questions
if anything is not clear, or if you would like more information. You should only take part in this
research study if you want to. Your decision will not affect your child’s clinical care.
Why is this research study needed?
Large numbers of children are admitted to hospital everyday with infections. The cost of these
admission to the hospital has been well defined and researched. However, little is known about
the non-medical personal out of pocket costs, such as food, fuel, and time taken off work, faced
by families and carers. This topic is an important issue as families are facing rising costs of living.
What is the aim of the research?
We want to estimate the non-medical out-of-pocket costs for families during a child’s admission.
The results may be used to help identify ways that we could help reduce the financial burden
related to an admission.
Why have my child and I been chosen?
You and your child have been chosen as he/she may have an infectious or an inflammatory illness
that has required an admission to hospital.
What are the advantages and disadvantages to joining the study?
The study may not help you directly, but the findings of the study could help improve services in
the future for children and their carers.
What will happen if you wish to withdraw your child from the study?
You may withdraw from the study at any time, you don’t have to give a reason and it will not
affect the standard of care your child receives.
Understanding and describing the non-medical out
of pocket cost of a hospital admission to families
and guardians

2. What will happen to the results of the research study?
The study will take 6 months to complete. Findings will be shared with people who organise
health care services. Results of this research may be published in scientific journals. Details of
this will be posted on the project website (www.diamonds2020.eu) and on twitter
(@DIAMONDS_2020). You or your child will not be identified in any information written or
presented about the study.
Who is organising and funding the research?
The research is being co-ordinated by Professor Michael Levin in the Section of Paediatric
Infectious Disease at Imperial College London in collaboration with hospitals and scientific
institutions in and outside Europe. This study has been reviewed and given approval by the
Dulwich Research Ethics Committee. The research is funded by the European Commission.
What are the contact details for the local research team?
The Principal Investigator at The Newcastle upon Tyne Hospitals NHS Foundation Trust is Marieke
Emonts can be contacted at 0191 2825984. The local research team at The Newcastle upon Tyne
Hospitals NHS Foundation Trust can be contacted at 0191 2820553.
Which data will the NHS hospital Trust share with Imperial College?
The only personal information to be shared with Imperial College will be your child’s date of
birth. Imperial College has a secure cloud-based Research Data Storage system which complies
with GDPR. Imperial College will ensure that this personal information is kept secure, and it will
never be published.
Who is responsible for looking after the data?
Imperial College London is the sponsor for this study and will act as the data controller. This
means that Imperial College London is responsible for looking after your results. All information
collected will be kept confidential and non-identifiable.
What if there is a problem?
If you wish to complain or have any concerns about any aspect of the way you or your child has
been treated during the course of this study then you should immediately inform the Principal
Investigator: Marieke Emonts at 0191 2825984.
In addition, the Patient Advice and Liaison Service (PALS) offers confidential advice, support and
information for health-related matters. They can also give you advice on the NHS complaints
procedure and how to get independent help if you want to make a complaint. You can find your
nearest PALS office on the NHS Choices website or from your GP surgery, hospital or phone NHS
111. If you are still not satisfied with the response, you may contact the Research Governance
and Integrity Team (RGIT) at Imperial College. If you incur costs as a result of a complaint, you
may have to pay your own costs.
How can you complain about use of your personal data?

3. If you wish to raise a complaint on how we have handled your personal data, please contact
Imperial College London’s Data Protection Officer via email at dpo@imperial.ac.uk, via telephone
on 020 7594 3502 and/or via post at Imperial College London, Data Protection Officer, Faculty
Building Level 4, London SW7 2AZ.
If you are not satisfied with our response or believe we are processing your child’s personal data
in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO)
(www.ico.org.uk or 0303 123 1113). The ICO does recommend that you seek to resolve matters
with the data controller (us) first before involving the regulator.
Thank you for reading about our study

4. Chief investigator: Prof. Michael Levin
Principal Investigator: Dr Marieke Emonts
Search Participant information sheet – Children aged 5-12 years
Introduction You and your parents/ carer are being invited to take part in a research
study. They will be asked to answer some questions online. You should only take part if
you want to. If you do not want to that is okay, and it will not affect your stay in hospital.
Why are we doing this research? We want to know what it is like for your familiy when you come
to stay with us. We want to know things like how you get here, where you get your food from
and who stays with you. We want to know if there is anything we can do to make the stay better.
Why have you been chosen? You have been asked because you have had to come into hospital
and stay overnight to get better.
What are the good points and bad points about joining the study? The study might not help
you, but the answers may help other children and their families when they come into hospital.
What will happen if I change my mind? If you do not want to be part of the study anymore that
is okay, you can leave at any time no questions asked!
What will happen to the results of the research study? We hope to write up the results and
present them to other people who want to know more about what it is like for families/carers to
stay in hospital.
What if there is a problem? If you are unhappy during the study, then you should tell us or your
parents.
Who to contact for further information - The Principal Investigator at The Newcastle
upon Tyne Hospitals NHS Foundation Trust is Marieke Emonts can be contacted at 0191
2825984. The local research team at The Newcastle upon Tyne Hospitals NHS
Foundation Trust can be contacted at 0191 2820553.
Thank you for reading about our study
Understanding and describing the non-medical out
of pocket cost of hospital admission to families and
carers