v1 NICU PPI information booklet

Help make a difference to GenOMICC

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.

GenOMICC - babies born less than 32 weeks

Patient and Public Involvement (PPI)

About GenOMICC

Welcome

How you can help

How it works

What next?

Our PPI policy

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We have created this booklet to let you know more about what taking part in a PPI dicussion involves.If you do decide to help, you will be very warmly welcomed!

We want to hear your views!

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We would like to speak to those affected by preterm birth, including parents, loved ones and caregivers, to help inform our research.

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 before 32 weeks.

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.

GenOMICC

About GenOMICC

Welcome

How you can help

How it works

What next?

Resources

Our PPI Policy

Contact us

Spring 2024

Patient and Public Involvement (PPI)

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

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You can find out more about GenOMICC by watching our short video here:

Click here to watch the GenOMICC video explainer

We have recruited over 25,000 adults and older children in the UK and we now hope to recruit babies born less than 32 weeks who have spent time in a NICU, to help us understand the genes that may play a role in a chronic lung disease that affects premature babies called bronchopulmonary dysplasia (BPD).

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

GenOMICC

Resources

About GenOMICC

Welcome

How you can help

How it works

What next?

Our PPI policy

Contact us

Patient and Public Involvement (PPI)

Your opinion really matters to us

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 us. 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 DNA collection from preterm babies, the study design, or by helping us develop study materials such as 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!

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GenOMICC

About GenOMICC

Welcome

How you can help

How it works

What next?

Resources

Our PPI policy

Contact us

Patient and Public Involvement (PPI)

Everyone is warmly welcomed

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 90 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 – 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.

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

Get in touch and share your news

GenOMICC

About GenOMICC

Welcome

How you can help

How it works

Resources

What next?

Our PPI policy

Contact us

Patient and Public Involvement (PPI)

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.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.

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

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GenOMICC

Our PPI policy

About GenOMICC

Resources

Welcome

How you can help

How it works

What next?

Patient and Public Involvement (PPI)

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.

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Get in touch and share your news

What next?

Contact us

GenOMICC

About GenOMICC

Welcome

How you can help

How it works

Our PPI policy

Resources

Get in touch and share your news

Patient and Public Involvement (PPI)

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

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Charity registrationSC044017

What next?

Resources

Contact us

GenOMICC

About GenOMICC

Welcome

How you can help

How it works

Our PPI policy

Get in touch and share your news

Patient and Public Involvement (PPI)

Resources

Premature baby support

• Bliss

Help with mental health

• NHS Choices

• The Mental Health Foundation

• YoungMinds

Bereavement support

• Cruse Bereavement Support

• Child Bereavement UK

• Mind

• At a loss

Other

• Sepsis Research FEAT

• Asthma + Lung UK

• TinyLife

• Rainbow Trust

• Tommy's

• The Smallest Things