Challenges and opportunities for real-world evidence in clinical oncology—a view from the UK: proceedings of a national workshop

• Published in: ESMO Real World Data and Digital Oncology 2024-12, Vol.6, p.100089, Article 100089
• Main Authors: Craddock, M., Dempsey, C., Abdulwahid, D., Baldwin, J.P.C., Banfill, K., Carver, A., Chaturvedi, A., Cheeseman, S., Cowell, G.W., Daly, M., Dekker, A., Dubash, S.R., Duffield, S., Fornacon-Wood, I., Garcia, M.A.C., Goodley, P., Green, H., Holley, R.J., Ingram, S., Jones, S., Kennedy, J., Lighterness, A., McGarry, C.K., McLaughlin, O., Mir, R., Papiez, B.W., Snelling, D.E.J., Theophanous, S., Warren, S., Zucker, K., Price, G., Faivre-Finn, C.
• Format: Article
• Language: English
• Subjects: clinical trials; data science; evidence-based radiotherapy; patient data; real-world data
• ISSN: 2949-8201; 2949-8201
• DOI: 10.1016/j.esmorw.2024.100089

Real-world data (RWD) are defined as information collected about patients as a routine part of treatment. To understand the status of RWD initiatives in oncology in the UK, an online survey and in-person workshop were conducted which aimed to characterise current perceptions of RWD, establish where real-world evidence (RWE) could support unmet clinical need, and to identify the barriers and solutions to obtaining this evidence. Self-selecting health care professionals including oncologists, physicists, radiographers, and health data researchers, as well as patient representatives, participated in an anonymous survey (N = 55) and/or a 1-day workshop (N = 46). The workshop consisted of introductory presentations followed by three 1 hour grouped breakout sessions. An inductive thematic analysis synthesizing the outcomes of the survey and workshop was carried out post hoc. Despite issues of perceived poor data quality and the prevalence of unstructured data, 92% of survey respondents recognised the potential of RWD to provide novel evidence. Suggested applications of RWE were validation of trial results in the general population, continuous evaluation of new technologies, decision-making in rare disease groups, and resource allocation. Barriers to progression of RWD initiatives identified were data accessibility, data quality, and prioritisation. Potential solutions include streamlining information governance processes, training staff in data science skills, and demonstrating clinical benefit. The potential of RWD to provide novel evidence is strongly recognised in the UK radiotherapy community. While barriers to progress were identified, none of them are insurmountable. To move forwards, the profile of RWE needs to be elevated to attract higher prioritisation and resourcing. •The UK radiotherapy community strongly recognises the potential of real-world data.•Barriers to wider usage include data accessibility, data quality, and prioritisation.•Information governance processes need to be streamlined to improve data access.•Training staff in data science skills would contribute to improving data quality.•Higher prioritisation is needed to realise the potential of real-world data.