YOUNG PEOPLE AND HEALTH TECHNOLOGY: PATIENT AND PUBLIC INVOLVEMENT GROUP – WHAT WILL HAPPEN IF YOU DECIDE TO TAKE PART?

Thank you for your interest in taking part in our Patient and Public Involvement (PPI) group. This article outlines the purpose of the PPI group and what will happen if you decide to take part.

What is Patient and Public Involvement (PPI)?

  • Patient and public involvement (PPI) involves carrying out research with or by patients or members of the public, rather than carrying out research about or for patients or members of the public.
  • Our research is looking at the best ways to develop health technology for use by children and young people. Talking with children, young people, and their families means that we hear what is important to you that we should find out in this project.

What is the PPI group and who is being invited?

  • We are inviting children and young people aged 11-18 years and who have a health condition to be part of our PPI group. We are also asking parents or carers of a young person with a health condition to be involved.
  • We would like to have between 6 and 10 people involved in the PPI group.
  • We will meet as a group to share experiences and ideas about health technology and what is important to think about when developing health technology for use by young people.
  • Our first meetings will be online, but we may meet face to face later in the project if you are happy to do so and it is possible.

What is the purpose of the PPI group?

The purpose of this group is for the research team to hear from young people and their parents about what is most important to consider when developing health technology for use by young people to manage a health condition.

Who is involved in this project?

This project involves the Universities of York, Leeds, Sheffield and Sheffield Hallam, as well as the NIHR Children and Young People MedTech Co-operative which is based at Sheffield Children’s Hospital.

How will the group meet?

If you are happy to take part in the PPI group, you can let us know by email or phone. We will then be in touch to ask you to complete a doodle poll to tell us when you could join us for the first meeting. This meeting will take place using free online video conferencing software such as Zoom.

What will taking part in the PPI group involve?

  • We will ask you to join us for 3-4 meetings between now and the end of June 2022. You don’t have to attend all the meetings.
  • At the meetings there will be other young people and parents and a few of the researchers from the project.
  • We will tell you about our research and ask for your input. You can say as much or as little as you like, and you can also provide your input via email or phone if you prefer.
  • We would like your help in the early stages to develop a logo for the project.
  • One of the research team will make notes during the meetings so we know what was discussed. We will share the draft notes with you after each meeting.
  • We will give you some I Love to Shop vouchers to thank you for your time. If you need to travel to attend a meeting, we will pay these costs for you.

Can I change my mind about taking part?

Yes! It is up to you to decide whether you would like to take part. If you decide to take part, you can change your mind at any point without giving us a reason.

How will you use the information collected during the meetings?

We will use the information to help us with our project. Your real name will not be used, so nobody will know that you took part, or what you said.

Who can I contact to ask for more information?

If you have any questions, please email Dr Jackie Martin-Kerry (jackie.martinkerry@york.ac.uk), lead researcher for this project.




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