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. 2023 Feb 11;14(5):459–469. doi: 10.1007/s12687-023-00638-y

Table 1.

Service delivery* co-design

Initial considerations — reflected in expert review and literature

Uncertainty: 

• PGS may be scaled out and supported through population health services, but specific provider training needs and infrastructural supports for this are unclear

• Primary care physicians (PCPs) seem to find risk conveyed by PGS intuitive with current risk prediction and multifactorial disease models (Smit et al. 2021)

• PGS is a numerical value grounded in a population distribution and can be incorporated into existing clinical risk calculators used in preventive screening (Smit et al. 2021)

• The underlying genomic methodologies and limitations are less familiar for providers, and should be a focus of future training (Smit et al. 2021; Vassy et al. 2018)

Co-design considerations — community preferences and local adaptation

Community preference: 

• Patients are more inclined to engage with new and possibly sensitive information (like PGS) if they trust the healthcare system

• Current uncertainties about PGS limitations and clinical utility require attention to informed choices about PGS testing. PGS cannot simply be offered across a healthcare system by anyone

• While PGS is a numerical value, it is still grounded in genetics and feels sensitive or emotionally laden to our group. Thus, provider capacity to support PGS testing decisions should also require skills in assessing personal values and personal utility

• Providers with proper training are not helpful if they are not available in a reasonable time. Access is an important dimension of quality care

Programmatic decisions

Co-design lesson: 

• Service delivery is an opportunity for building trust, and decisions should not solely be driven by logistics

• Provide suggested questions and educational materials to the patient pre-visit to prepare patients to think about their values in advance and maximize provider-patient discussion during the visit

• Provider training is not just about education; it is also about skills development. Patient advocates can help providers understand the importance of personal utility in test decisions, as well as the emotional nature of genetic information

• Care should be coordinated through team-based care and provider handoffs if different specialists are involved. This provides the stability needed for long-term preventive health discussions