HIFA global consultation (4) Should access to reliable healthcare information be a human right?

19 November, 2023

Dear HIFA colleagues,

Below are some extracts on our previous forum discussion around Question 4 in the global survey, and a comment from me. Our partner Digital Medic at Stanford University is currently analysing the quantitative and qualitative results of the survey, so there will be more to come from the survey itself. Meanwhile, I look forward to further inputs here on the forum:


Neil Pakenham-Walsh, UK: Access to reliable healthcare information is already recognised as a determinant of the right to health, although it is not specifically recognised as a right in itself.

The implications of this are discussed in a white paper that HIFA published with the New York Law School. For background, see: https://www.hifa.org/about-hifa/hifa-universal-health-coverage-and-human...

There are some who believe access to healthcare information should be a human right in itself.

Pragmatically, I'm not sure there is a watertight case for this and it would take years of wrangling. Why not focus on the fact that it is already recognised as a determinant of the right to health?

As such, governments have an obligation to ensure that their citizens have access to reliable healthcare information. It is clear that many governments do not fulfil this obligation. As we saw during the COVID-19 pandemic, some governments actively ignored this obligation and even proactively spread misinformation.

Geoff Royston, UK: Under international human rights law and treaties governments are legally obliged to take steps to improve access to health information. As far as I know, there is no single state that has explicitly recognised this obligation... What avenues could there be to encourage, persuade or pressure states to fulfil their legal obligations in regard to universal access to the determinants of health, particularly health (care) information? Best Regards Geoff

[The following organisations have been proposed as taking the lead in the right to health:

1. 'WHO has made a commitment to support Member States in their efforts to mainstream human rights into healthcare programmes and policies by looking at underlying determinants of health as part of a comprehensive approach to health and human rights.' Chris Zielinski: Although WHO used to have a department and a sizeable group of staff invoved in human rights aspects, this now seems to have dwindled to two small sections in the Director-General’s Office.

2. 'The PHM (People's Health Movement) is a global network... committed to Comprehensive Primary Health Care and addressing the Social, Environmental and Economic Determinants of Health.' www.phmovement.org

3. The Sustainable Health Equity Movement (SHEM) https://www.sustainablehealthequity.org/ ]

Bernard Seytre, France: I don’t think that access to healthcare information should be considered as a human right... I am afraid that trying to associate the promotion of reliable healthcare information to a human right would be counterproductive. It will seem exaggerated and inappropriate to many people and won’t contribute to win their support.

Chris Zielinski, UK: Although the Universal Declaration of Human Rights itself does not guarantee a right of access to essential information, the discussion continues in its subsequent implementation documents, or "covenants". In May 2000, the UN Committee on Economic, Social and Cultural Rights in a covenant document, stated that the right to health was “an inclusive right”, and that among the determinants to health included was “access to health-related education and information”. The Committee went further, defining “information accessibility” as “the right to seek, receive and impart information and ideas concerning health issues”.

Richard Fitton, UK: The WHO plans to publish the first WHO Patient Safety Charter on December 10th 2023 - the 75th anniversary of the Declaration of Hunan Rights. The rights will include the right to information, right to patient access to their records and Right to ownership of their records.

COMMENT (NPW): Can anyone add to the above? For me, the inputs to date imply that current legal provisions already obligate governments to ensure their citizens have access to reliable healthcare information (the main challenge being to get governments to recognise and act on their responsibility). We have not yet heard from those who want to see access to reliable healthcare information advocated as a human right in and of itself.

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