Funding decisions for newborn screening: a comparative review of 22 decision processes in Europe.
Decision-makers need to make choices to improve public health. Population-based newborn screening (NBS) is considered as one strategy to prevent adverse health outcomes and address rare disease patients' needs. The aim of this study was to describe key characteristics of decisions for funding new NBS programmes in Europe. We analysed past decisions using a conceptual framework. It incorporates indicators that capture the steps of decision processes by health care payers. Based on an internet survey, we compared 22 decisions for which answers among two respondents were validated for each observation. The frequencies of indicators were calculated to elicit key characteristics. All decisions resulted in positive, mostly unrestricted funding. Stakeholder participation was diverse focusing on information provision or voting. Often, decisions were not fully transparent. Assessment of NBS technologies concentrated on expert opinion, literature review and rough cost estimates. Most important appraisal criteria were effectiveness (i.e., health gain from testing for the children being screened), disease severity and availability of treatments. Some common and diverging key characteristics were identified. Although no evidence of explicit healthcare rationing was found, processes may be improved in respect of transparency and scientific rigour of assessment.
Hamburg Center for Health Economics, Universität Hamburg, Esplanade 36, 20354 Hamburg, Germany. katharina.fischer@uni-hamburg.de.
Katharina Elisabeth
KE
Fischer
Helmholtz Zentrum München, German Research Center for Environmental Health, Institute of Health Economics and Health Care Management, Ingolstädter Landstr. 1, 85764 Neuherberg, Germany. rogowksi@helmholtz-muenchen.de.
Wolf Henning
WH
Rogowski
D003657:Decision Making; D003695:Delivery of Health Care / Q000191:economics* / Q000592:standards; D005060:Europe; D005062:European Union; D006801:Humans; D007231:Infant, Newborn; D015997:Neonatal Screening / Q000191:economics*