Coordination Design in Networks and the Scope of Care Access Improvement: Evidence from Care Production for Rare Diseases

There are deep inequalities in access to care for patients, even within developed and rich countries. In France, several studies (Grimaldi et al., 2011) have acknowledged that these inequalities spring from delisting of drugs from health insurance, freedom to set prices for physicians, two-tier medicine, and healthcare system organisation. Persons suffering from rare diseases are particularly concerned by inequalities in access to care, because only a small number of doctors know these diseases, little is known about how to follow up these diseases, rare diseases medicines are often expensive, and it is difficult to conduct clinical trials for rare diseases. Geographically-isolated people suffer more from this problem, since their practitioners are more likely to experiment information gap by being distant from medical facilities of large urban areas. As a result, patients with rare diseases can wait until 30 years to have a diagnosis delivered, and have few options for treatment, though rare diseases are often life-threatening.

In this paper we analyse in what extent inequalities to care access are alleviated through a new public device tagged as networks for rare diseases. We analyze these networks from the New Institutional Economics (NEI) perspective, and we consider them as a hybrid form of organization (Williamson, 1991). Rare diseases combine the peculiarity of having an uncertain and infrequent production of care and requiring specific knowledge, which corresponds to the assumptions made by the Transaction Costs Economics. NIE has shown that authority is the coordination tool of these hybrid forms (Menard, 1997). But literature scarcely tackles hybrids coordination, except empirical surveys focussing on contracts’ forms (Oxley, 1997; Sampson, 2004; Silverman et al., 1997). As there is an increasing acknowledgement in economics and management literature that hybrids play a key role in modern market economies (Grandori and Soda, 1995), it is necessary to emphasize the characteristics of coordination in hybrids. We propose a refinement of the analysis of hybrids’ coordination, distinguishing different designs of the authority that performs this coordination function. We built a new typology that identifies four types of authorities that coordinate hybrids: legitimate, to be anchored, challenged, and contested. We distinguish the ability of different authorities to be efficient by turning away the main performance standards mobilized by TCE empirical analysis (firms’ income or durability), and by testing if a design of authority has a highest propensity to improve access to care in rare diseases networks. It is a relevant performance criterion to care networks, since networks are known to allow large flow and transfer of information (Powell et al., 1996; Podolny and Page, 1998). Based on an original data set collected through in site interviews and 587 questionnaires, our study shows that network coordination carried by legitimate authority allows better access to care than other designs of authority. Indeed, through this design of authority, patients are more familiar with the existence of the network that is dedicated to their disease, and tend to consult it more, because the authority that coordinates the network is better able to circulate information and knowledge.