The potential of health data to improve health research and development, innovation, healthcare delivery, and health systems is substantial. Harnessing this potential will require ensuring requisite technological capacity, appropriate governance and institutional arrangements, collaboration and coordination across sectors and stakeholders, and workforce and citizen capacity-building to engage with data and public acceptability for its use.

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Understanding value in health data ecosystems

A review of current evidence and ways forward

by Sonja Marjanovic, Ioana Ghiga, Miaoqing Yang, Anna Knack

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Research Questions

  1. What are the potential and existing benefits of the effective use of health data?
  2. What are the required elements of a supportive data ecosystem and their implications for future research, policy and practice?

The potential of health data to improve the efficiency and effectiveness of health research and development, healthcare delivery, and health systems more widely is substantial. There are many initiatives across the EU that are experimenting with ways to capture value and address the nexus of technical, legal, ethics-related, governance and data protection-related, and cultural challenges to delivering potential benefits for society and the economy. The field of health data research and policy is highly dynamic and there is a need for further reflection, thematic learning and evaluation to better understand how to create and connect receptive places, to inform future interventions and to identify transferable lessons. Our research emphasises that realising the benefits of health data at scale will require: a simultaneous focus on the technological and structural conditions that are required; collaboration and coordination to transform working cultures and build health and care workforce and citizen capacity to engage with data; and efforts to ensure that policy, industry, and research communities respond to public concerns, needs, and expectations in a timely and sustained manner. The global community of individuals and organisations with a stake in health data will also need to consider how progress can benefit different populations across the world in an equitable manner.

Key Findings

  • The literature on health data generation and use identifies a myriad of potential social and economic benefits, spanning three broad categories: (i) benefits for various stages of the R&D process, (ii) benefits for pharmacovigilance and public health and (iii) benefits for healthcare delivery and the health ecosystem more widely. Within each category, we discuss diverse potential benefit types.
  • Creating sustainable and effective health data ecosystems will require: (i) considering the value propositions presented by health data in the context of interdependencies and interactions between stakeholders and sectors, (ii) building on existing efforts and momentum to address data quality and technical considerations, (iii) making the most of recent data protection advancements and considering models of data sharing, (iv) considering workforce capacity-building by supporting professionals in making the most out of health data and (v) learning from previous efforts to increase public awareness, acceptability and engagement with health data.

Table of Contents

  • Chapter One

    Background and context

  • Chapter Two

    Key types of health data

  • Chapter Three

    Different uses of health data and associated value

  • Chapter Four

    Enabling receptive health data ecosystems

  • Appendix A

    Methodological Approach

  • Appendix B

    List of Consulted Experts

  • Appendix C

    Value of Health Data – Selected Examples

Research conducted by

The research described in this report was conducted by RAND Europe.

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