Deciding How to Decide: The Case of Health Care Rationing

Abstract

One of the challenges awaiting health care systems around the world is the containment of expenses in the face of exploding costs for new drugs and treatments. In most countries, the allocation of health care has not been politicized so far and the problem is still treated as a purely regulative one. However, there is increasing interest in the procedures used for priority‐setting. The paper argues that while normative standards for their evaluation are desirable, more attention should be paid to institutional factors and their effects. I identify two demands on decision‐making—discursiveness and coordinativeness—from which I derive four ideal‐typical procedures. By way of international comparison, corresponding empirical cases are analysed. I conclude with considerations on whether efficient and publicly accepted decisions over the allocation of health care are possible and, if yes, by means of what type of procedures and in what forum(s) they can be taken.

Challenges in Measuring the Societal Value of Orphan Drugs: Insights from a Canadian Stated Preference Survey

“…That said, our findings suggest that if policy makers and scholars continue to focus exclusively on the zero-sum dilemma faced by reimbursement decision makers, they may be missing an important element of citizens' preferences for the funding of orphan drugs, a deficiency that is likely to be exacerbated as members of the public learn more about and become more engaged with the orphan-drug issue. This is problematic from a normative perspective because it undermines the fundamental rationale for consulting the public in the first place; that is, increasing the democratic legitimacy of resource allocation policies whose implementation is largely left up to unelected bodies [4]. Future work should therefore aim to incorporate a greater variety of opportunity costs and policy options into scenario designs (e.g.…”

“…By focusing on the 'zero-sum' dilemma faced by coverage decision makers, and not including these options in surveys aimed at measuring the societal value of treating rare diseases, scholars risk informing the policy debate with estimates of societal preferences that do not take into account the full range of resource allocation options available to the polity as a whole, thus calling into question the very purpose of citizen participation, which is to increase the democratic legitimacy of decisions with distributive consequences [4,5]. Moreover, the value conflict instigated by 'zero-sum' frames is likely to lead to increased rates of choice avoidance and preference instability since respondents will tend to seek out alternative options that are not included in the choice sets presented to them.…”

“…In practice, many decision-making bodies cover orphan drugs even though they rarely meet the usual thresholds for cost effectiveness used in traditional health technology assessment (HTA) [3]. However, since these are inherently value-laden decisions that have distributive consequences, there is growing acceptance of the democratic deficit created by delegating these types of decisions exclusively to expert bodies [4,5] and of the consequent need to integrate societal preferences into HTA and reimbursement policies as a means of increasing the democratic legitimacy of policies in this area [6]. Researchers have devoted particular attention to determining whether citizens value the rarity of a disease, independent of other factors, when forming resource allocation preferences [7][8][9][10].…”

Demokratisches Institutionendesign in der Priorisierung und Rationierung von Gesundheitsleistungen

“…Leistungen entschieden wird, verstärkt in den Fokus geraten [2]. An die Stelle der Hoffnung, dass ein Konsens über Prinzipien gerechter Verteilung gesellschaftliche Konflikte über knappe Ressourcen befrieden könnte, ist ein kritisches Hinterfragen der Legitimation von Priorisierungs-und Rationierungsentscheidungen im demokratischen Rechtsstaat und ein Interesse an der direkten Einbindung von Bürgern in Entscheidungsprozesse getreten [3].…”

“…Anschließend werde ich in Hinblick auf die Frage nach einer angemessenen institutionellen Ausgestaltung entsprechender Gremien den von Norman Daniels und James E. Sabin entwickelten Kriterienkatalog der ,,Accountability for Reasonableness'' [4,5] diskutieren und darlegen, weshalb dieser zu unspezifisch ist, um konkretes institutionelles Design anzuleiten (2). In Abschnitt (3) werde ich vier Vergleichskriterien darstellen, mit Hilfe derer sich Entscheidungsverfahren zur Definition von Leistungskatalogen in der Gesundheitsversorgung beschreiben lassen.…”