世界经济论坛：2020年联合数据联盟模型中共享敏感的健康数据：八步指南 （英文版）（26页）.pdf

1、Sharing Sensitive Health Data in a Federated Data Consortium Model An Eight-Step Guide I N S I G H T R E P O R T J U LY 2 0 2 0 Contents Foreword Introduction Step 1 Establish and sustain trust Step 2 Jointly determine the problem for a federated approach Step 3 Align on incentives and organizationa

2、l capacity Step 4 Identify resourcing team leadership and funding Step 5 Identify institutional differences or gaps in policy Step 6 Create a consortium governance model Step 7 Structure the data Step 8 Deploy the API technology Conclusion Appendix Acknowledgements Endnotes 3 4 6 9 11 13 15 17 20 21

3、 22 23 23 24 2020 World Economic Forum. All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, including photocopying and recording, or by any information storage and retrieval system. Sharing Sensitive Health Data in a Federated Data Consortiu

4、m Model2 Foreword At the World Economic Forum, we think of data as the oxygen that fuels the fire of the Fourth Industrial Revolution. It is readily available and necessary but, if used improperly, it can generate dangerous and unwelcome results. Concerns over how to protect valuable data, especiall

5、y sensitive, personal data, are at the core of many countries and institutions data policies. We see a complex and dynamic data policy landscape evolving around health data in particular; it is becoming more and more complicated to share data to the extent desired to advance research, innovation and

6、 patient outcomes. The need to rapidly provide access to health data, while protecting patient privacy and data security, has never been more urgent in the fight against the COVID-19 pandemic. This paper is part of the Forums work to create actionable resources for policy-makers, healthcare professi