世界经济论坛-良好的数据：共享数据并促进公众信任和意愿（英文）-2021.4-31页_862kb

Summary of "Good Data: Sharing Data and Fostering Public Trust and Willingness" (April 2021)

Core Content

This white paper explores the concept of "good data" and emphasizes the importance of ethical data handling and public trust in the context of secondary data use. It outlines two key frameworks designed to guide data users in fostering trust and ensuring ethical practices: the Trust and Willingness Framework and the Good Data Framework.

Main Views and Key Information

1. Secondary Data Use and Data Sharing

• Growing Expectations: Secondary data use is becoming increasingly important as data circulates beyond its original purpose, creating additional value for society.
• Value of Shared Data: According to the OECD, shared data can be 10–20 times more valuable for data users and 20–50 times more valuable to the economy as a whole.
• Current Initiatives:
  • Finland introduced the Act on the Secondary Use of Health and Social Data in May 2019, enabling anonymized data use for research and innovation.
  • Japan began sharing anonymized health data for public interest purposes in October 2020.
• Challenges in Data Sharing:
  • Most government initiatives focus on public sector data sharing.
  • Only 15% of initiatives involve private sector data sharing.
  • Public concerns about privacy, discrimination, and data misuse are rising.

2. The Trust and Willingness Framework

• Importance of Trust: Trust is essential in data circulation, especially in the Fourth Industrial Revolution, as it reduces social complexity and facilitates cooperation.
• Why Trust is Broken: Trust is often broken due to:
  • Gaps between data users' intentions and public expectations.
  • Lack of understanding of data usage.
  • Inadequate consent processes.
  • Risks of privacy invasion.
  • Biased or misleading media reporting.
• Building Trust:
  • Addressing these gaps through stakeholder engagement and transparent communication.
  • Reducing the discrepancies that lead to public distrust.
• Social Uncertainty: Trust is affected by information asymmetry and the intangible nature of data, leading to uncertainty among data subjects.

3. The Good Data Framework

• Ethical Data Handling: This framework focuses on ethical considerations in data use, including privacy, fairness, and social justice.
• Classification of Data Utilization: It categorizes data use based on its ethical implications and provides checkpoints for ethical compliance.
• Governance in the Data Era: Governance must evolve to include ethical, legal, and social considerations, especially in the context of emerging technologies.
• Human Impact Assessment: The paper proposes a method for assessing the human impact of data use through specific checkpoints.

4. From Notice and Consent to Trust and Willingness

• Limitations of Notice and Consent: Traditional notice and consent models are insufficient, as many users do not read or understand privacy policies.
• Need for New Models: A new data handling scheme is needed to ensure trust, especially among vulnerable populations such as those with dementia or cognitive impairments.
• Framework Application: The Trust and Willingness Framework and the Good Data Framework can be used to address these issues and promote trust in data use.

Key Players in Healthcare Innovation

• Tech Companies: The Big Five US tech companies (Alphabet, Amazon, Apple, Facebook, Microsoft) and BATs in China are investing in healthcare data integration.
• Other Industries: Companies from energy, insurance, real estate, and telecoms are also entering the healthcare market.
• Start-ups and Research Organizations: Digital health start-ups and research entities are contributing to the expansion of the healthcare data ecosystem.

Issues Identified

• Lack of Private Sector Governance: There is a lack of structured initiatives in the private sector to ensure ethical data use.
• Public Concerns: Increasing public concerns about data misuse, privacy, and social impact.
• Data Ethics Literacy: Businesses, especially those in healthcare, often lack the necessary understanding of data ethics.

Conclusion

The white paper highlights the need for a shift from legal compliance to a trust-based approach in data handling. It presents two frameworks—Trust and Willingness and Good Data—to guide data users in building public trust and ensuring ethical practices. These frameworks are intended to support the development of a more inclusive, sustainable, and resilient data ecosystem.

Contributors

• World Economic Forum
• Various stakeholders and experts in data governance and healthcare innovation

Endnotes

• References to OECD guidelines, AI principles, and other related studies are included to support the arguments and frameworks presented.