Working with uncertainty

The role of patients and healthcare providers in new data practices for reimbursed care
Drie paar handen houdt een uit papier gesneden familie vast

Runtime: September 2021 – December 2022
Client: National Healthcare Institute

Project description

Managing the package of insured care is an important task of the National Healthcare Institute (ZIN). This task is never done; the ongoing development of medicines and treatments, and the context of a multi-stakeholder and international policy domain, require constant attention. ZIN is expected to provide advice to the Ministry of Health, Welfare and Sport (VWS) on whether or not medicines and treatments can be reimbursed.

These recommendations, often based on extensive analyzes of the current 'state of science and practice' and very sensitive to media attention, are increasingly subject to uncertainties. For example, the (cost) effectiveness of new drugs and treatments often remains unclear, amongst others due to their increasing 'personalization'. This applies before, but also after their admission to the basic benefits package. Moreover, for many treatments, especially in relation to new genetic therapies, there are many uncertainties about long-term effects. Discussions about the legitimacy of different types of evidence to arrive at these recommendations are also increasing. Nevertheless, ZIN is expected to provide advice on inclusion in the basic benefits package despite these persisting uncertainties. 

In this study we explore how ZIN works on these uncertainties. We pay particular attention to the role of patients and care providers in 'iterative health care coverage decision-making’ (cyclisch pakketbeheer), i.e. the idea that package advice is not a one-off decision 'at the front', but that it is also possible to periodically look back on the recommendations made, in order to better identify the extent to which a medicine or treatment also turns out to be sufficiently (cost-)effective in practice. We are investigating how ZIN can further flesh out the conditions for data collection by citizens and healthcare providers in the context of conditional reimbursement. Through two case studies (paramedic recovery care for covid and Eculizumab for patients diagnosed with aHUS) we consider two concrete practices of conditional reimbursement.

Our research shows that there is not one clear narrative of what cyclisch pakketbeheer entails, but that it encompasses a plurality of wishes and ideas about how ZIN should contribute to good care and management of the benefits package. We identify three central tensions in the implementation of cyclisch pakketbeheer, through which we reflect on policy making (protocolizing or improvising), on the relationship between professionals and ZIN (keeping professionals in the lead or getting a grip on their work) and on the position of patients (as source of data or as a legitimate stakeholder). Our research leads to three recommendations. Firstly, ZIN can sharpen the narrative around cyclisch pakketbeheer together with other stakeholders. Secondly, ZIN can embrace the diversity in sources of (scientific) legitimacy more. Third, ZIN can take a more proactive role in the interactions with field parties and the ministry regarding package management.

Team

ESHPM: dr. Bert de Graaff, dr. Rik Wehrens.

Publications

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