From “wading through treacle” to “making haste slowly”: A comprehensive yet parsimonious model of drivers and challenges to implementing patient data sharing projects based on an EPaCCS evaluation and four pre-existing literature reviews

Conceptually, this study aimed to 1) identify the challenges and drivers encountered by England’s Electronic Palliative Care Coordination System (EPaCCS) projects in the context of challenges and drivers in other projects on data sharing for individual care (also referred to as Health Information Exchange, HIE) and 2) organise them in a comprehensive yet parsimonious framework. The study also had a strong applied goal: to derive specific and non-trivial recommendations for advancing data sharing projects, particularly ones in early stages of development and implementation. Primary data comprised 40 in-depth interviews with 44 healthcare professionals, patients, carers, project team members and decision makers in Cambridgeshire, UK. Secondary data were extracted from four pre-existing literature reviews on Health Information Exchange and Health Information Technology implementation covering 135 studies. Thematic and framework analysis underpinned by “pluralist” coding were the main analytical approaches used. We reduced an initial set of >1,800 parameters into >500 challenges and >300 drivers to implementing EPaCCS and other data sharing projects. Less than a quarter of the 800+ parameters were associated primarily with the IT solution. These challenges and drivers were further condensed into an action-guiding, strategy-informing framework of nine types of “pure challenges”, four types of “pure drivers”, and nine types of “oppositional or ambivalent forces”. The pure challenges draw parallels between patient data sharing and other broad and complex domains of sociotechnical or social practice. The pure drivers differ in how internal or external to the IT solution and project team they are, and thus in the level of control a project team has over them. The oppositional forces comprise pairs of challenges and drivers where the driver is a factor serving to resolve or counteract the challenge. The ambivalent forces are factors perceived simultaneously as a challenge and a driver depending on context, goals ...