Stakeholder engagement towards establishing a national thyroid cancer registry in South Africa

Abstract

Background: Patient registries in South Africa (SA) are not common. This study explored the perceptions and experiences of thyroid clinicians and members of existing patient registries in SA, aiming to establish a national thyroid cancer registry.

Methods: This was an exploratory qualitative study based on surveys and semi-structured interviews of participants’ experiences treating thyroid cancer and using registries in general. Convenience sampling was performed for the surveys (n = 27) and purposive sampling for the interviews (n = 20). Data collection and analysis were conducted concurrently, facilitating an iterative process. The thematic analysis followed the steps outlined by Braun and Clarke.

Results: Four themes were identified. The South African healthcare system, the perceived value of a patient registry, the role of various stakeholders, and barriers to registry implementation. Participants expressed the value of registries in SA for both clinical and research purposes. However, concerns were raised regarding perceived challenges, such as resource and time constraints.

Conclusion: Developing a national thyroid cancer registry in SA requires responsiveness to national and local challenges and opportunities, necessitating an adaptable registry format. The principle of a registry is strongly supported by clinician stakeholders. The registry, as a clinical note-keeping system, will optimise clinicians’ time efficiency in patient care, and standardisation of radiology and pathology reporting across a uniform platform will enhance patient care and data entry. The benefits of a registry strongly outweigh the challenges as it facilitates the development of local guidelines, improves patient outcomes, and promotes collaborative research among endocrine clinicians.