NICU PPI information booklet

GenOMICC

Patient and Public Involvement (PPI)

Welcome

Help make a difference to GenOMICC

About GenOMICC

We want to hear your views!

How you can help

Patient and Public Involvement (PPI for short) is a way for researchers like us to hear from those most affected by the work we are doing.

How it works

What next?

It is only by talking and listening to those with a real lived experience that we can learn about ways we could make our research better and we would like to hear from people who's baby was born less than 32 weeks.

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You don't need to have taken part in any research before. You only need to have had a neonatal intensive care unit (NICU) experience, either as a parent, caregiver, or a loved one of a baby born less than 32 weeks.

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GenOMICC

Spring 2024

Patient and Public Involvement (PPI)

Welcome

We are a research study taking place in critical care units all over the UK

About GenOMICC

How you can help

And we now hope to start including babies born less than 32 weeks who have spent time in a NICU, so we can help understand the genes that play a role in the chronic lung problem, bronchopulmonary dysplasia (BPD).

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If we can find the specific genes that control the process leading to the development of BDP, we might be able to design new ways to treat this condition.

Resources

Click here to watch our video and find out more about GenOMICC

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GenOMICC

Patient and Public Involvement (PPI)

Welcome

Your opinion really matters to us

About GenOMICC

Parents, caregivers, and loved ones of babies who were born before 32 weeks and spent time in the NICU have the lived experience that is so valuable to help us approach our reseach. It doesn’t matter where in the UK you’re based, we want to hear from you. You could help by taking part in discussions about the design of our study, or by helping us develop consent forms and information sheets. No previous experience is needed, all we ask for is your views and opinions. We want to make sure we provide good, clear information about the research we are doing and the best people to ask are those who it will affect most. So, if there is anything you don't understand or you think is not explained clearly, no matter how small, then we would really like to know – so we can try and improve!

How you can help

How it works

What next?

Our PPI policy

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Resources

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GenOMICC

WE'LL SAY THANKS FOR YOUR TIME WITH A £25 VOUCHER

Patient and Public Involvement (PPI)

Welcome

Everyone is warmly welcomed

About GenOMICC

How you can help

We welcome everyone to join our friendly discussions. Don't worry, we will talk to you beforehand so you know what to expect. Our conversations are usually online where we are happy to help you join the call, but they can also sometimes be in person over coffee and cake. Our discussions are generally in small groups of no more than 4 people. They usually don’t take longer than 60 minutes. We are really flexible to fit around your commitments and if taking part in a goup discussion is difficult for you, we can have a one to one chat instead – so don't let that stop you from getting in touch. You won't be out of pocket either. We will cover all travel expenses for in person sessions and also childcare costs.

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What next?

Our PPI policy

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GenOMICC

Patient and Public Involvement (PPI)

Welcome

We will provide as much information as we can to help you decide if you would like to join a discussion

About GenOMICC

How you can help

If you decide that taking part in our PPI discussions is something that you're interested in, please contact us using the details at the end of this booklet (by phone or email). Members of our very friendly team will be on hand to have an informal chat at a time that suits you.

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What next?

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Resources

Afterwards, if you are happy to be included on our list of people willing to take part in discussions, we will make a note of your contact details and be in touch. If you do decide to help, you will be very warmly welcomed!

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GenOMICC

Patient and Public Involvement (PPI)

Welcome

Expenses: GenOMICC will reimburse all reasonable expenses associated with the involvement in PPI activities, such as childcare costs for online or in person meetings, the costs of travelling to participate in an activity or refreshments during an activity. We have an expense claim form for this purpose and will need your receipts and car mileage. Data Protection: We will only collect your name and contact details so we can get in touch to arrange a PPI session or send you information. Your details will be held securely, and we will never share or disclose these to anyone outside of the GenOMICC team. We will delete your information if you no longer want to take part or be contacted about future PPI sessions. Payment: We will offer you a £25 shopping voucher as a thank-you for taking part in meetings online or in person. Please be aware that accepting a voucher could potentially have tax implications for you which you would be individually responsible for. If you like, you can decline to accept the voucher or even donate it to charity. Accessibility: If attending meetings (online or in person) or accessing and reading our material proves challenging, please let us know and we will do our best to find a way around this.

About GenOMICC

How you can help

How it works

What next?

Our PPI policy

Contact us

Resources

Get in touch and share your news

GenOMICC

Patient and Public Involvement (PPI)

Welcome

Contact us

About GenOMICC

How you can help

Telephone: 0300 365 7660 Email: GenOMICC@roslin.ed.ac.uk Thank you for taking the time to read through this information and we hope to hear from you!

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GenOMICC

Patient and Public Involvement (PPI)

Welcome

Resources

About GenOMICC

Premature baby support

Bereavement support

How you can help

• Bliss

• Cruse Bereavement Support

How it works

• Rainbow Trust

• Child Bereavement UK

What next?

• TinyLife

• Mind

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• Tommy's

• At a loss

• The Smallest Things

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Resources

Other

Help with mental health

• NHS Choices

• Sepsis Research FEAT

• The Mental Health Foundation

• Asthma + Lung UK

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• YoungMinds