What is the challenge your project is going to address and how does it connect to your chosen theme?

Current treatment regimens cure over 80% of children who develop cancer. However, their lives are turned upside down not only by their treatment journeys but by the often gruelling regular follow up and surveillance that is required after cure.

Once a child’s treatment is finished they embark on 5 years of routine surveillance followed then often by referral into late effects services well into adulthood. Novel strategies for supporting families to engage and happy and healthy lives rather than tied to frequent hospital visits are needed.

What does your project aim to achieve?

Using experience-based co-design methodology we aim to develop novel out-patient follow-up strategies using co-production with patients and families from the outset.

Given the nature of EBCD methodology, we do not currently know the solution that will work best for our patients and their families but by working with them from the outset we feel we can develop improvements to the current traditional model.

We are keen to explore using advances in technology to enable care to be delivered in a more flexible and patient/family-centred way aligning with the needs of working parents and children’s educational commitments. These will include but are not limited to opportunities for greater use of tele-medicine, linking to the trusts uptake of personalised digital health records and consideration of patient triggered reviews.

How will the project be delivered?

Our project will be delivered by a multi-disciplinary team approach with early and active engagement with patients and families.

After an initial scoping period interviews will be undertaken with families and staff. Filming will be undertaken of these interviews and they will be transcribed. Thematic analysis will identify the key themes that are relevant to families and staff.

An edited film will then be produced which shows the issues in a powerful way. This film will be shared in a learning event where the families and the whole MDT come together to discuss the issues raised.

From this event, co-design groups will form to work on the solutions/ issues and help to co-produce novel solutions.

After the successful implementation of the changes we will host a celebration event with the involved families and healthcare staff.

EBCD is a powerful methodology that enables true co-production with patients and families.

What and how is your project going to share learning throughout?

We are active twitter users and will update the Q community throughout using our twitter handle.

As active members of the Oxford Trust QI Hub we will share our experience and learning throughout the wider trust.

The Childrens Cancer & Leukaemia Group (CCLG) our national body has national meetings and regular newsletters and we will present our work and the national conference and international SIOP (Society of Interational Oncology) conference.