How we can help Chief Investigators with their Paediatric studies?

By Birmingham YPAG,

Researchers want to hear what we have to say

Researchers want to hear what we have to say

There are many ways we’ve been helping Chief Investigators with their Studies in the West Midlands.

From Development of Patient Information Sheets for the RAPID Study, you can watch our FILM HERE to show how we helped the Chief Investigator of this study.

WE have also been helping with not only Patient Information Sheets and Questionnaire design for studies but also with the dissemination of studies. You can read below what the study team had to say about our involvement.

“Working with the young persons’ group meant that we created a much more robust trial as the patient reported outcome measures were relevant to our target population. Their help not only improved the design of the trial but also the dissemination as they helped create a short video about the trial which has been showcased at National and International events. I am always proud to talk about working with children and young people and I know that I can rely on the Young Persons Steering Group to provide me with honest advice on any aspect of my research work.”

“In the time that I have spent with the young persons’ steering group, they have provided me with advice and support in aspects of the ACCEPT study. By sharing their views and opinions in the early stages, we were able to efficiently design a trial that was meaningful to children. The group has given valuable feedback to dissemination documents and also helped to make a short video clip that has been used in public engagement events, which describes the importance of involving children in research. It has been a great experience working with this group and I look forward to liaising with them for future research projects.”

We have also recently been working with another researcher who is the Chief Investigator for a Palliative Care Study – you can read about the involvement of our group and also some other young person’s groups from the blog below written by the Chief Investigator of the Journey Through Care study.

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The Journey Through Care: Working NIHR West Midlands CRN Young Person’s Steering Group – July 2016
“Why are you going to work on a Saturday Mummy” said my children as I left the house on 16th July 2016. “I’m going to speak to some young people about my research project”, I replied “And I’m very lucky that this is my work!”

It was great to spend time at the July meeting of NIHR CRN West Midlands Young Person’s Steering Group who are also part of the Generation R Alliance and meet each month at Birmingham Children’s Hospital and to have the chance to discuss my PhD research project with the group. My project, “The Journey through Care” research into the experiences that children and young people with life-limiting or life-threatening conditions, and their families, have of healthcare services. This group are the third group of young people I have been able to talk to over the past few months, alongside Acorns Sibling Council and the Birmingham Children’s Hospital Young Person’s Advisory Group. Each group have given me different perspectives on the design of my project, and have together made a significant contribution to designing the research protocol, posters and leaflets, navigating the NHS ethics approvals processes and in shaping how the research will be carried out.

During the NIHR CRN Young Person’s Steering Group Meeting, I was given both verbal and written feedback on my ideas, interview plans, and resources (including finding spelling mistakes) and we had a conversation also about using social media to carry out more Patient and Public Involvement work in the future. Some of my worries about using Twitter, for example, were addressed by group members with far more expertise than me, and we talked also about designing a project website and / or film in the future.

Meeting young people and discussing my project has been brilliant. I listened carefully to the comments of the NIHR CRN West Midlands Young Person’s Steering Group and managed my first project Tweet straight after the meeting. Through our Patient and Public Involvement (PPI) work so far I have been able to recruit co-authors for literature reviews and have presented at local conferences with group members. I am really looking forward to organising some more exciting PPI events over the coming months, with a focus on getting the messages of the research heard. Co-design is a key element of the project, which will allow us to learn new skills and approaches together. The openness and honesty of opinion that I have received is refreshing, and the feedback gets me thinking every time. I would like to say a big thank-you to the NIHR CRN West Midlands Young Person’s Steering Group for having me at their meeting.
Going forward my plans to work with the NIHR CRN West Midlands Young Person’s Steering Group include collaboration on a project about the language of palliative care which I would like to ask a group of young people to lead on, design and carry out and collaboration on a potential paper that I am writing about working with young people on research.

Sarah.j.mitchell@warwick.ac.uk Twitter: @journeythrucare