Peas in a Pod

What is Patient and Public Involvement (PPI)?

PPI is about giving people a say in what research studies we do and how we do them.

We want our research to lead to better care for pregnant people and their children. To do this, we need to hear from people who are or have been pregnant about things like:

What questions we should study
What answers are important for them
How we find and invite people to take part in our research studies
How our research studies are carried out

Who are ‘Peas in a Pod’?

Peas in a Pod is a group of people who are pregnant or have been pregnant in the last 2 years and are willing to be contacted about PPI activities. Everyone is welcome to join and you’ll be able to say how you would prefer to be contacted and what sort of activities you would like to help with.

These might include:

Taking part in a survey, either online, by post or by phone
Meeting to talk about a particular study, either online or face-to-face
Reviewing the information leaflets we give to people who might join our studies
Joining one of our study steering groups
Helping decide how Peas in a Pod should be run

Want to get involved?

You can email us at [email protected] if you want to join the group or just find out more.

Left to right: Jayne Wagstaff is a Research Midwife, Malenka Bissell is a paediatric cardiologist and Rebecca Spencer is an obstetrician.

Want to find out more about pregnancy research or PPI?

Useful links:

Leeds Pregnancy Research Group

University of Leeds PPI information

National Institute for Health Research (NIHR) PPI information

Organisation: Leeds Teaching Hospitals NHS Trust

The data we collect:

Personal data: The minimum data we need is your name, contact details and the approximate dates of your most recent pregnancy. Contact details can be an email address, a postal address and/or a telephone number (you do not need to supply all of these). We will also ask what activities you would like to hear about (surveys, reviewing documents, focus groups, face-to-face events), your age, your ethnic background and whether you had any complications during your pregnancy. This information is optional, but it will help us identify the most appropriate people to ask about certain questions.
PPI data: If you take part in one of our PPI activities we will collect any responses or feedback you provide as part of the activity.

What is the lawful basis for us collecting this data?
We are collecting this data with your consent. You have the right to take back this consent at any time and have your data deleted.

What we do with the data:

Personal data: Your personal information will be stored in a password protected file on the Leeds Teaching Hospitals servers. We will not share this information with any other organisations or any companies without your permission.
PPI data: The responses and opinions you give us as part of the PPI activities might be shared with other researchers or organisations. This would not include any information that could be used to identify you unless you specifically agreed to this.

How long we will keep the data:
You can ask for your information to be removed at any time by emailing us at [email protected]. Your personal data will be removed from our database two years after the end of your pregnancy.

What other rights do you have?
You can request a copy of the information we hold about you at any time and you have the right to correct any inaccurate or incomplete information. You can request that we pass on your information to another organisation. You can request information about how we process the data, including automated processing. You can put limits on the way we process your data and you have the right to challenge the way we process your data.