Lived Experience Expert (Cancer and/or Clinical Trials)

Application Deadline: 14 November 2025

Department: Impact & Charitable Programmes

Location: Great Ormond Street Hospital Children's Charity

Description

We are Great Ormond Street Hospital Charity. We stop at nothing to help give seriously ill children the best chance and the best childhood possible. We do it by funding groundbreaking research, cutting-edge medical equipment and life-changing support. For the children from all over the UK who are treated by Great Ormond Street Hospital every day. For children with rare or complex illnesses everywhere. For this generation and all those to come. Because we believe no childhood should be lost to serious illness.

In 2023 the Charity launched our new research strategy. The ambition of our research strategy is to transform the lives of children with rare or complex conditions by working to improve outcomes through research-led care. We aim to improve the treatment, care and survival of the very sick children seen at GOSH by:

• Increasing understanding of the origins and biology of disease
• Advancing treatments, cures and new interventions
• Improving the everyday experience of children living with rare and complex diseases Developing world-class infrastructure to increase and improve research opportunities

With this new strategy, we have launched several new funding schemes, as well as a complementary 2024-2029 Cancer Research Strategy.

In 2025 we launched a National Paediatric Cancer Clinical Trial Fund, which aims to support the development of new more effective and targeted treatments. The Charity aims to expand its ambition in the future through running subsequent funding calls in Paediatric Clinical Trials open to a wider range of rare or complex paediatric illnesses in cancer and beyond.

To help ensure the research we fund meets the highest possible standards of quality, accountability, transparency and openness – as well as dedicated scientific expert panels – we also have a Research Patient Insight Panel made up of Lived Experience Experts (LEEs). We define Lived Experience Experts as individuals who uses their personal knowledge and experience to contribute to and inform decision-making processes. Relevant experience for the Research Patient Insight Panel would include personal or family involvement in paediatric healthcare, whether as a patient or as someone who has closely supported a child receiving care. These individuals will use their lived experience to help ensure the Charity only funds research which has the greatest potential to impact seriously ill children.

The Research Patient Insight Panel contributes to the funding decisions made by our scientific expert panels. They provide an essential non-scientific, non-research related perspective that ensures the patient is as the centre of the research we fund and that what we fund can be communicated to a non-expert audience. This Panel is involved in deciding whether research proposals meet our patient and public involvement and engagement standards - an applicant receiving funding for their research proposal is contingent on addressing the Research Patient Insight Panel’s feedback.

With the launch of the National Paediatric Cancer Clinical Trial Fund, GOSH Charity is looking to recruit up to 3 individuals with lived experience of paediatric cancer or involvement in clinical trials (disease agnostic) to join our Research Patient Insight Panel, and ensure we have a breadth of experience representative of the research we are looking for fund. This could include former patients, survivors, parents, carers, siblings or close friends who have experience of NHS paediatric cancer care or have been involved in a clinical trial or study. You can find out more about all the research funding schemes we currently support here.

What to expect

You will be part of our network of lived experience experts and a member of our Research Patient Insight Panel for an initial term of three years, renewable by mutual agreement for a second term of three years.

• The Panel will meet up to five times a year. The meetings will be between 1 and 3 hours in duration, and the meeting dates will be agreed in advance.
• You will review grant applications by drawing on your lived experience and scoring them based on provided criteria.
• You will be invited to a meeting to share your thoughts on the applications with other Panel members.
• Meetings will be set well in advance to allow you to plan accordingly.

Location

Meetings will mostly be held virtually. If you are required to attend a meeting in person, this will be held in our London offices, opposite Russell Square Tube station. You will be given notice well in advance and the Charity will cover all associated travel costs and support you in arranging these.

What we are looking for

Essential:

• At least 18 years of age at the time of application.
• Must be based in the UK.
• Access to a laptop/tablet/phone and internet connection.
• Previous lived experience of paediatric cancer and/or paediatric clinical trials (either first hand as a patient / survivor or as a parent, carer, or close friend)
• An interest in research, especially in paediatric cancer and/or paediatric clinical trials.
• Confidence and clarity voicing opinions within group discussions.
• Degree of flexibility and willingness to commit for the full duration of this role.

Desirable:

• Experience of engagement with a charity.
• Confidence with written communication.

You do NOT need to have:

• A medical, scientific or healthcare background.
• Any current knowledge of GOSH Charity or the work we do.
  
  

What's in it for you?

We recognise the value of lived experience and the importance of involving it in shaping the Charity’s work. We also acknowledge the barriers that prevent individuals giving their time for free. In recognition of this, we would like to offer an optional payment as a token of appreciation and compensation for an individual’s expert advice and guidance. The remuneration rates are as follows:

• £12.50 for involvement in a task or activity which equates to less than 30 minutes.
• £25 up to 2 hours involvement
• £50 up to 4 hours involvement
• 100 up to 8 hours (full day) involvement

Tax and National Insurance implications:
You are required to notify HM Revenue and Customs (HMRC) of fees received only if your annual income exceeds your personal income tax allowance at the end of the financial year (5th April). Any honoraria paid to you for your involvement with GOSH Charity are therefore subject to tax and National Insurance depending on your personal income status. The payments are not taxed at source by GOSH Charity; meaning you are responsible for calculating whether you need to pay and tax or National Insurance. GOSH Charity staff cannot provide individual tax or National Insurance contribution advice. If in any doubt, please contact your local HMRC Office, information about which is available here.

This role will also enable you to:

• Be involved with our enthusiastic Charity team, meet new people, and become more involved in the child health community.
• Play a pivotal role in helping to improve research funding at GOSH, helping us give seriously ill children the best chance, and the best childhood possible.
• Use and develop your skills, while gaining valuable experience that will contribute to your personal and professional growth.

What you can expect from us to support you in the role:

• An induction session to provide you with additional information on GOSH Charity, the various research funding streams we support, and the scope of your role.
• A key contact who will be available to answer any questions you may have and support you during your role.
• Clear communication about application review timelines and meetings, and the prompt provision of materials that support these processes to allow plenty of time to prepare.
• Flexibility when setting meeting dates and times to suit your availability.
• A flexible and understanding relationship with the Charity.
• A safe and open environment for you to provide feedback on your experience in this role.
• Feedback from the Charity on how your contributions have helped us to improve the lives of seriously ill children.

What you can expect from us to train you for the role:

• A walkthrough of what you will be asked to do when reviewing funding applications with time for Q&A.
• Signposting to resources to help you understand how to avoid bias when reviewing applications.

Equity and diversity
GOSH recognises the strength of equality, diversity, and inclusion – and how a diverse group of lived experience experts can help us reflect the diversity of our patients and their families at GOSH. Therefore, we welcome applicants from all backgrounds.

We also recognise that disabled people, or those with long-term health conditions, may need additional support from us to fulfil this role. We are more than happy to make reasonable adjustments and cater to your needs; please do get in touch with us via [email protected] and let us know how we can best support you and your application.

How to apply
If you are interested in joining our network of lived experience experts and contributing to the work GOSH Charity does, please apply here by 14 November.

Once the application deadline has passed, we will review your responses to the questions against the points listed in the ‘What we are looking for’ section above. Applicants who meet these criteria will be invited to for an informal chat with members of the team, providing an opportunity to ask questions about the role and for us to get know you better. These discussions will occur from mid/late November.

If you have any questions, please contact [email protected]