ESTRO 2024 - Abstract Book

S2894

Interdiscplinary - Other

ESTRO 2024

Material/Methods:

UK healthcare professionals involved in the collection, management or analysis of patient data were invited to respond to the survey which was disseminated through professional bodies and mailing lists; 55 complete responses were recorded. The workshop was attended by 46 people consisting of oncologists, physicists, radiographers, patient representatives, data scientists and health data researchers from centres across the UK. Three 1-hour grouped breakout sessions were held in which attendees discussed current perceptions and status of RWD, areas of unmet clinical need where RWE could support clinical decision making and the barriers to developing the datasets required to provide this evidence. Each breakout group presented a summary of their discussion supported by flipchart notes. An inductive thematic analysis synthesizing the outcomes of both the survey and workshop was performed post-hoc.

Results:

Perceptions & status

Poor data quality due to missingness, the prevalence of unstructured data and a lack of established data quality tools, all contribute to “we don’t know what we have” being a common description of the current status of RWD in the UK. Both the survey and workshop discussions highlighted the issue of the engagement of staff responsible for data acquisition, with the optimisation of data collection workflows, training and demonstration of clinical impact highlighted as possible solutions. Despite these major issues, 65% of survey respondents indicated that RWD was currently being used for research in their centres (figure 1).

Unmet clinical need

Areas of potential clinical application of RWE suggested were validation of clinical trial results in the general population, ongoing evaluation of novel radiotherapy techniques and new technologies, decision making in rare disease groups and optimisation of patient experience and resource allocation.

Barriers/solutions

As shown in figure 1, poor accessibility of RWD was identified as a major barrier to the further development of RWD initiatives. Data governance processes, lack of support services, system interoperability and difficulty finding specific records were equally identified as causes. Potential solutions include developing best practice guidelines for clear and efficient governance processes and agreeing upon a common data export standard for all systems used in oncology. Establishing trusted research environments (TRE) at all centres was also identified as a change in infrastructure which would facilitate greater use of RWD and ideally these should be for all forms of healthcare data to avoid an unnecessary proliferation of specialised TREs. A lack of prioritisation and resourcing was a theme underpinning many of the identified barriers and as summarised in figure 2, attendees felt that demonstration of clinical benefit, improving engagement by building an RWE-focused community in oncology and lobbying of key decision makers/funders would contribute to elevating the profile of RWE.