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Funding Decisions for Newborn Screening: A Comparative Review of 22 Decision Processes in Europe

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  • Katharina Elisabeth Fischer

    (Hamburg Center for Health Economics, Universität Hamburg, Esplanade 36, 20354 Hamburg, Germany
    Helmholtz Zentrum München, German Research Center for Environmental Health, Institute of Health Economics and Health Care Management, Ingolstädter Landstr. 1, 85764 Neuherberg, Germany)

  • Wolf Henning Rogowski

    (Helmholtz Zentrum München, German Research Center for Environmental Health, Institute of Health Economics and Health Care Management, Ingolstädter Landstr. 1, 85764 Neuherberg, Germany
    Institute and Outpatient Clinic for Occupational, Social and Environmental Medicine, Clinical Center, Ludwig Maximilians University, Ziemssenstr. 1, 80336 Munich, Germany)

Abstract

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.

Suggested Citation

  • Katharina Elisabeth Fischer & Wolf Henning Rogowski, 2014. "Funding Decisions for Newborn Screening: A Comparative Review of 22 Decision Processes in Europe," IJERPH, MDPI, vol. 11(5), pages 1-28, May.
    • Handle: RePEc:gam:jijerp:v:11:y:2014:i:5:p:5403-5430:d:36212
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    References listed on IDEAS

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    1. Fischer, Katharina E. & Leidl, Reiner & Rogowski, Wolf H., 2011. "A structured tool to analyse coverage decisions: Development and feasibility test in the field of cancer screening and prevention," Health Policy, Elsevier, vol. 101(3), pages 290-299, August.
    2. Norman, Richard & Haas, Marion & Wilcken, Bridget, 2009. "International perspectives on the cost-effectiveness of tandem mass spectrometry for rare metabolic conditions," Health Policy, Elsevier, vol. 89(3), pages 252-260, March.
    3. Fischer, Katharina E. & Rogowski, Wolf H. & Leidl, Reiner & Stollenwerk, Björn, 2013. "Transparency vs. closed-door policy: Do process characteristics have an impact on the outcomes of coverage decisions? A statistical analysis," Health Policy, Elsevier, vol. 112(3), pages 187-196.
    4. Wieser, Bernhard, 2010. "Public accountability of newborn screening: Collective knowing and deciding," Social Science & Medicine, Elsevier, vol. 70(6), pages 926-933, March.
    Full references (including those not matched with items on IDEAS)

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