Introduction University College London Hospital is one of the two nationally commissioned centres delivering Proton Beam radiotherapy (PBT) to the UK’s population, covering the southern half of the country, with the Christie in Manchester providing the service to northern regions. This form of radiotherapy is given for specific NHSE commissioned indications. One of the main advantages of PBT is the reduction in late side effects following treatment; this requires the annual collection of a Nationally agreed dataset for clinical outcomes for at least 10 years following treatment. The successful development and implementation of a pathway to collect this information is fundamental for the demonstration of benefit of PBT. The collection of this data for clinical outcome measures does not replace their clinical follow up so the service needed to be considered in this context. Internal and external patients come for PBT therefore access to clinical information varies across our cohort.

Aims and objectives of the research project or activity To develop a pathway to collect clinical outcome data which needs to be:

• Comprehensive

• Efficient

• Provides information about purpose of appointment to manage patient expectations

• Easily accessible for patients from a wide geographic area

• Addresses the challenges of a large paediatric and teenage population

• Scalable as numbers of patients treated increases

Method or approach A working group (including clinicians and administrative staff) was convened to develop this pathway. Initial sessions mapped out the requirements (clinical, administrative, technical, logistical) at each phase.

PBT clinical fellows undertook an evaluation of a subset of early patients to establish levels of existing data including any gaps, developed an appointment letter template, and a clinic outcome letter to document findings. We consulted a local GP about letter content to ensure a benefit for primary care.

The administrative team developed a clinic template, organised the workflow within our EHRS (EPIC) including infrastructure for video consultations.

Following feedback from key stakeholders (patients/parents, reception staff and clinicians) on a 4- week pilot phase the team reconvened to discuss successes and challenges. The pathway was refined following this feedback.

A system was agreed for ensuring the requesting of absent data. A clinician handbook, was developed to ensure thorough and consistent data collection.

Findings This was relatively unique as ‘clinic’ pathway being about data collection for national evaluation purposes rather than direct patient care. Early patients/carers reported that they valued the clear explanation of this in the appointment letter and again reiterated at first consultation.

Appointment times were longer than we had initially expected as completion of data entry sheets was time consuming. This has been factored into appointment times and list lengths going forward and can be scaled for modelled increase in patient numbers. Inevitably some patients had new symptoms not known by their treating team, so we need close links in order to refer them back to their team in a timely manner.

Access to the appropriate technology for video appointments was patchy. Patients require a camera phone and an active app which interacts with our EHRS. The admin team are now contacting patients in advance to help them set this up and we hope video call rates will improve.

Given our large paediatric population we discovered there were understandable concerns about children missing school. Some parents set up a room in school if school hours. Otherwise, we prioritised children to the beginning or end of lists to minimise absence from school.

Key messages Unique considerations apply when a clinical follow-up pathway is primarily for the purpose of data collection rather than direct patient care, outside a clinical trial.

These must be as easy for patients as possible as consultations are additional to clinical follow up and shouldn’t result, for example, in children missing school, in order for us to collect information.

Patients need tailored levels of help to allow them to make best use of technology in the setting of a necessarily remote clinic.

When patients come from multiple external centres nationally, a linked- up approach must be used to ensure access to appropriate investigations and clinical data.

Use of proformas can reduce the administrative burden of clinicians undertaking such clinics and ensure comprehensive data collection.