Building a learning health system using clinical registers: a non-technical introduction

Abstract

Purpose The purpose of this paper is to describe how clinical registers were designed and used to serve multiple purposes in three health systems, in order to contribute practical experience for building learning healthcare systems. Design/methodology/approach Case description and comparison of the development and use of clinical registries, drawing on participants’ experience and published and unpublished research. Findings Clinical registers and new software systems enable fact-based decisions by patients, clinicians, and managers about better care, as well as new and more economical research. Designing systems to present the data for users’ daily work appears to be the key to effective use of the potential afforded by digital data. Research limitations/implications The case descriptions draw on the experience of the authors who were involved in the development of the registers, as well as on published and unpublished research. There is limited data about outcomes for patients or cost-effectiveness. Practical implications The cases show the significant investments which are needed to make effective use of clinical register data. There are limited skills to design and apply the digital systems to make the best use of the systems and to reduce their disadvantages. More use can be made of digital data for quality improvement, patient empowerment and support, and for research. Social implications Patients can use their data combined with other data to self-manage their chronic conditions. There are challenges in designing and using systems so that those with lower health and computer literacy and incomes also benefit from these systems, otherwise the digital revolution may increase health inequalities. Originality/value The paper shows three real examples of clinical registers which have been developed as part of their host health systems’ strategies to develop learning healthcare systems. The paper gives a simple non-technical introduction and overview for clinicians, managers, policy-advisors and improvers of what is possible and the challenges, and highlights the need to shape the design and implementation of digital infrastructures in healthcare services to serve users.