Dr Jessica Bate explains what the project is and how you can get involved.

Dr Jessica Bate is a paediatric oncology consultant based at University Hospital Southampton. She graduated from Cambridge University and the Royal Free University College London Medical School in 2001. She completed her clinical training in paediatric oncology at Great Ormond Street and the Royal Marsden. During her training, she was appointed as a Clinical Lecturer at St George’s, University of London (2008-2011).

Dr Bate has extensive clinical research experience within paediatric oncology and is an NIHR grant holder. She has a strong interest in sarcoma, supportive care and patient / public involvement in research. She has recently been appointed as the National Ewing Sarcoma Multi-disciplinary Team (NEMDT) Fellow, hosted at University College London and supported by the Bone Cancer Research Trust.

What is the National Ewing's Sarcoma Multi-disciplinary Team (NEMDT)?

The NEMDT is a unique forum established in 2011 to improve the treatment planning and choices for patients with Ewing Sarcoma. It brings together experts from around the UK to discuss individual patient treatment plans to ensure good practice and ultimately to improve the survival rates of UK patients with Ewing Sarcoma. It was formed in 2011, following an international consensus meeting supported by the Bone Cancer Research Trust.

What is your connection to the NEMDT?

I have recently been appointed as the NEMDT Fellow, hosted at University College London Hospitals NHS Trust. I am extremely grateful to the Bone Cancer Research Trust and the Ewing Sarcoma Research Trust for this opportunity to work at national level to shape and improve the treatment strategy for patients with Ewing Sarcoma. I am passionate about making my research patient centred by encouraging those affected by Ewing Sarcoma to influence the project by sharing their opinions and experiences.

What will the NEMDT research project involve?

This project is all about the NEMDT: how it has worked, its impact and how it should work in the future. The first part of the project is to evaluate the NEMDT since it started in 2011. The second part of the project is to design the NEMDT of the future.

How can I help?

As part of this important project, we want to invite patients and families affected by Ewing Sarcoma to act as advisors to our research. You would be working in partnership with other patients, carers and researchers to influence the NEMDT of the future. You do not need any previous experience, just a willingness to attend informal meetings (by phone, email or in person depending on your preferences) and to give your perspective as someone with experience of Ewing Sarcoma. The positions are voluntary but support will be provided and travel expenses will be reimbursed. Our first face-to-face meeting will be taking place in January 2017 in central London.

If I agree to act as a lay advisor, how much time will it take?

There is no minimum time requirement expected of you. You can choose how, when and to what extent you wish to contribute. If you are able to spare 20 minutes for a phone discussion or reply to an online survey, then this would be very welcome. If you are able to commit more time and attend a face-to-face meeting too, this would also be very much appreciated.

What are the possible benefits of taking part?

The NEMDT project is committed to involving patients and carers to ensure that our research benefits patients. We are keen to hear and learn from your experience. You will be able to offer a unique insight from a patient/carer perspective to give us feedback and ideas on how the NEMDT should be designed for the future.

If you are interested in finding out more please contact the project via email. You can also keep up to date by following Dr Bate on Twitter @Jessica_Bate.