NIHR Patient Engagement in Clinical Development Service: Are you interested in helping to improve health and care research?

The National Institute for Health and Care Research is pleased to share an opportunity for members of the public to be involved in the shaping of a commercial trial. They are looking for people who have experience of caring for a child with Post-Traumatic Headache, which is a headache caused by a concussion or mild traumatic brain injury.

They are working with a company to help them improve their planned research. Our partner is looking for people who are willing to share their experiences and insights in an online group discussion. This will help them to design a study that is focused on the needs of the patient, their family, and their community.

Who is the NIHR looking for?

• This opportunity is for 6 adults (aged 18 or over) who:
• Live in the UK
• Have lived experience, as a parent or carer, of a child aged between 6 and 18, diagnosed with post traumatic headache as a result of a mild traumatic brain injury (TBI) or concussion
• Can access and use an online video calling platform such as Zoom
• Are happy to discuss their lived experience in a group.

What do I have to do?

If you are interested in taking part, please complete the application form linked below. If you are successfully selected for the session, they will invite you and the other public contributors to take part in an online group meeting which will last for 2 ½ hours.
The meeting will be hosted by the NIHR PECD Team, together with the company they are supporting. 

The session will involve:
 

• Hearing about the impact the health condition has on your life
• The company talking to you about their planned research
• Sharing your thoughts and feedback on the planned research 

The NIHR PECD Team will support you throughout the session and will ensure that you have access to any information or guidance you might need to allow you to participate fully.

When will the meeting take place?

A date has not yet been set for this activity, but it is likely to take place in January. Timings of the session can be flexible, such as evening or late afternoon to allow for working hours and will be agreed in advance by participants and the company representatives. The activity will last for 2 ½ hours, including a short break.
 

Will I get paid?

The NIHR, on behalf of the company they are working with, will reimburse you £67.50 for your participation. This will be paid by bank transfer, usually 6 weeks after the activity has taken place (although it can occasionally take a little longer). You can find information about payment for research involvement activities, and the impact this may have on your tax and national insurance here.

What happens after the session?

The NIHR PECD team will write an anonymised report for the company, summarising the session’s discussions. The company will use this report to review their plans and make changes to their study based on the group’s feedback.
A few months after the activity, the PECD team will send an update from the company to all contributors detailing how the insights were used to improve the study’s design.