Developing clinician-centred design principles for Genomic Test Reports in Pakistan

Abstract

Despite rapid technological progress being made in genomics, a growing disparity is emerging between healthcare in developed and developing countries. This genomic divide can be partly explained by the scarcity of available genomics workforce and in some parts by limited genomic literacy of healthcare professionals that reportedly deters them from proposing genomic testing in a clinical setting. This study aims to study this gap in a local context and learn how we can reduce this genomic divide by developing a user-centred design of genomic test reports in Pakistan. The user being the clinician in this study. We selected two commonly used genomic reports which varied in language, content, and layout. Report A was a one-page genomic report from the Laboratory for Molecular Medicine at Partners Healthcare. Report B was a report with multiple pages of information from FoundationOneCDx. We employed a qualitative descriptive study design, including a survey of trainees, non-specialists, and specialists. The parameters recorded were: subjective comprehension, overall visual impression, level of difficulty of the language, and communication efficacy depending on the reports graphical representation, along with actionability and degree of reliability. A total of 49 medical professionals across 11 institutes in Pakistan participated in the survey. Based on the answers and suggestions provided by the participants, we extracted 11 recommendations and broadly grouped them into four categories, i.e. language, content, layout and reliability. Our findings highlights key areas that need to be taken into consideration when designing impactful genomic reports for clinicians in Pakistan. This incudes accessible and appropriate language, adequate content and a non-overwhelming and friendly layout as well as an emphasis on establishing reliability and actionability of what the clinician finds in the report. This can be instrumental in helping us improve the adoption of genomic testing in clinics around Pakistan, and potentially in other similar contexts.