Dear HIFA colleagues,
Today's Lancet carries a very interesting commission, including a section on 'Misinformation, disinformation, and the right to accurate scientific information'. Below are the citation, selected extracts and comments from me. I invite you to read on...
CITATION: THE LANCET COMMISSIONS|ONLINE FIRST
Under threat: the International AIDS Society–Lancet Commission on Health and Human Rights
Beyrer C et al. The Lancet
Published: March 21, 2024 DOI: https://doi.org/10.1016/S0140-6736(24)00302-7
You can read the full paper here: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(24)00302-7/fulltext
SELECTED EXTRACTS
'The International AIDS Society–Lancet Commission on Health and Human Rights, launched in 2021, has studied the state of health and human rights, explored the reasons for global backtracking on health and human rights, and developed recommendations for renewing and updating the health and human paradigm at a time of major technological, political, and social transformations...'
'Global commitment to human rights has deteriorated steadily in the 21st century, with serious and increasingly damaging effects on health...'
'The health field must actively work to recentre human rights in health practice. Human rights need to occupy a central place across all aspects of health policy making and practice...'
The paper is structured into six domains. Domain 6 is of particular interest to us:
Domain 6: Misinformation, disinformation, and the right to accurate scientific information
'The revolution in communications technologies in the past 35 years has offered important opportunities to advance health and human rights, including enabling access to essential health information for personal decision making and the formulation of sound, evidence-based health policies. At the same time, developments in information technologies, including the ability of anyone to post information or opinions, have had profoundly negative consequences, such as the spread of health disinformation and misinformation...'
'The right to information:... Access to health information is only meaningful if the information is scientifically accurate. Much of what circulates online is not...'
'Disinformation has at least four damaging effects, all of which have consequences for health: disengagement in democracy, interference in democracy, economic harm, and risks to life...
'Human rights approaches to address misinformation and disinformation: Solutions to address access to information are straightforward [sic! NPW]. Much progress is being made in expanding digital access, although wide inequalities remain...
'Social media companies such as X (formerly known as Twitter), Instagram, and Facebook need to take an important degree of responsibility for the accuracy of information shared on their platforms...'
'The Commission came up with three recommendations about misinformation, disinformation, and the right to accurate scientific information. First, the global community — including international donors, multilateral bodies (such as the International Telecommunication Union), national governments, and private sector actors in both HICs and LMICs — should collaborate to close the global digital divide and ensure universal access to digital technologies, including through meaningful investments in building sustainable and resilient digital infrastructure and economic and policy incentives for innovation. Second, national governments should establish mechanisms to monitor emerging technologies that facilitate disinformation, such as the creation of deepfakes, and work with experts in a broad range of disciplines to develop countermeasures, but should also recognise the difficult balance between the competing rights to free speech and to accurate information. Finally, public health authorities should actively combat disinformation by making full use of insights from psychology and communication science to deliver simple, compelling messaging and timely fact-checking. Individual clinicians should leverage their trusted relationships with patients and communities to deliver scientifically accurate information and combat disinformation.'
COMMENTS (NPW): The authors have certainly taken on a huge task in studying 'the state of health and human rights... at a time of major technological, political, and social transformations'. Their exploration of 'misinformation, disinformation, and the right to accurate scientific information' has some merits, but I cannot thelp but think that it has major limitations. The authors talk of 'the right to accurate scientific information' as a given. As we have discussed at length on HIFA, there is unfortunately no such right that is recognised in international human rights law. HIFA and the New York Law School published a white paper in 2012 that examined these issues. The bottom line is that access to health information is recognised as a *determinant* of the right to health but is not recognised as a right in itself. This is important because under international human rights law governments have an obligation to address determinants of rights as much as they do to address rights. One of the many findings of our recent global survey is that awareness of this nuance is probably very low, even among those with an interest in the concept of universal access to reliable healthcare information. It is therefore likely that awareness among governments is virtually non-existent.
Another point is that access to reliable healthcare inforamtion is in itself very much a human rights issue, as it impacts massively on decision-making, quality of care and health outcomes. The whole point of improving the availability and use of reliable (and relevant) healthcare information is to empower the public, health workers and policymakers to protect their own health and the health of those for whom they are responsible. I haven't had a chance to study the text in detail, but it seems this key point is hardly mentioned.
I was surprised to see the Commission's assertion that 'Solutions to address access to information are straightforward'. I think most of us on HIFA, who are professionally involved in different aspects of the global evidence ecosystem, would disagree.
On the basis of a few paragraphs the authors make three recommendations for future action. But I respectfully don't think these have been fully thought through. The seven recommendations of the World Medical Association (2019) are in my view more comprehensive, and even they could be further developed and improved. The global survey that HIFA recently completed (and which will very soon be published) recommends that WHO explicitly champions the goal of universal access to reliable healthcare information and convenes stakeholders across the global evidence ecosystem to develop a global strategy, with support from HIFA.' The Commission's three recommendations can be seen as points for discussion but not as the 'solutions to address access to information'.
Best wishes, Neil
HIFA profile: Neil Pakenham-Walsh is coordinator of HIFA (Healthcare Information For All), a global health community that brings all stakeholders together around the shared goal of universal access to reliable healthcare information. HIFA has 20,000 members in 180 countries, interacting in four languages and representing all parts of the global evidence ecosystem. HIFA is administered by Global Healthcare Information Network, a UK-based nonprofit in official relations with the World Health Organization. Email: neil@hifa.org
