WPA Chair Andrew Spiegel Speaks at WMA Expert Meeting in São Paulo - World Patients Alliance

São Paulo, Brazil | 5–6 March 2026
Andrew Spiegel, Chair of the World Patients Alliance (WPA), delivered a keynote address at the World Medical Association (WMA) Expert Meeting on “Health Data: Who Wants to Use It and For What?”, held in São Paulo, Brazil on 5–6 March 2026. The meeting brought together global experts to discuss emerging challenges and opportunities in the use of health data and to contribute to the ongoing revision of the WMA Declaration of Taipei.
Originally adopted in 2002 and updated in 2016, the Declaration of Taipei provides international ethical guidance on health databases and biobanks. The current revision aims to ensure the Declaration remains relevant in the context of rapidly evolving developments in digital health, artificial intelligence (AI), data linkage, and cross-border data sharing.
Bringing the Patient Perspective to the Global Dialogue
In his presentation, Spiegel emphasized that health data is deeply personal to patients. While health data can improve care, accelerate research, and strengthen public health systems, its misuse can undermine patient trust and potentially cause harm.
“Health data describes a person’s health and their life,” Spiegel noted, highlighting that patients support the responsible use of data but want strong safeguards to ensure their information is used ethically and transparently.
Presentation – Who Wants to Use…
He stressed that patient trust must be the foundation of any health data governance framework, particularly as health information is increasingly generated outside traditional healthcare settings through digital services, apps, and wearable technologies.
What Patients Expect from Ethical Health Data Use
From the patient perspective, Spiegel outlined key principles that should guide the ethical use of health data:
Clear purpose: Patients must understand why their data is used, who accesses it, and what decisions it informs.
Meaningful control: Consent must allow individuals to withdraw or modify their participation without losing access to healthcare.
Privacy by design: Data collection should minimize risk and ensure strong protections against re-identification.
Fair value: When value is created from health data, patients and communities should share in the benefits.
Accountability: Independent oversight, transparent monitoring, and accessible complaint mechanisms are essential.
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Balancing Innovation with Trust
Spiegel acknowledged that health data can serve many valuable purposes, including improving clinical care, enabling research and innovation, strengthening public health surveillance, and supporting responsible product development. However, he cautioned that trust breaks down when data is used beyond the purposes patients agreed to, when individuals can be re-identified through data linkage, or when misuse leads to discrimination or stigma.
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Strengthening the Declaration of Taipei for the Digital Age
In his remarks, Spiegel highlighted areas where patients believe the Declaration of Taipei should be strengthened to reflect new technological realities. These include clearer guidance on the use of data for AI development and training, stronger safeguards even for de-identified data, and improved transparency around how data is shared across borders.
He also emphasized the need for patient and community representation in governance structures, clearer communication about data use, and fair benefit sharing when health data contributes to scientific or commercial value.
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The Voice of Patients in Global Health Data Governance
The World Patients Alliance represents over 733 member organizations across 140 countries, advocating for patient engagement in healthcare policy, research, and service delivery. Spiegel’s participation in the WMA meeting underscored the critical role of patients in shaping global policies on health data governance.
As the revision process of the WMA Declaration of Taipei continues, WPA remains committed to ensuring that patient trust, rights, and meaningful participation remain central to the future use of health data worldwide.