User involvement in assisted reproductive technologies: England and Portugal

Purpose – The purpose of this paper is to compare user involvement in the case of assisted reproductive technologies in England and Portugal through the concepts of voice, choice and co-production, assessing the implications for user empowerment. Design/methodology/approach – This qualitative study draws primarily on policy review and uses exploratory semi-structured interviews with key informants as a way of illustrating points. Data on the following themes was compared: voice (users’ representativeness on licensing bodies and channels of communication between users and doctors); choice (funding and accessibility criteria; choice of fertility centres, doctors and level of care); and co-production (criteria through which users actively engage with health professionals in planning the treatment). Findings – Inter- and intra-healthcare systems variations between the two countries on choice and co-production were identified. Differences between funding and accessibility, regions, public and private sectors and attitudes towards doctor-patient relationship (paternalistic/partnership) were the key issues. Although consumer choice and indicators of co-production are evident in treatment pathways in both countries, user empowerment is not. This is limited by inequalities in accessibility criteria, dependence on doctors’ individual perspectives and lack of genuine and formal hearing of citizens’ voice. Originality/value – Enhancing users’ involvement claims for individual and organizational cultures reflecting user-centred values. Effective ways to incorporate users’ knowledge in shared decision making and co-design are needed to empower patients and to improve the delivery of care.