"Access to reliable healthcare information is (or should be) a human right: Do you agree or disagree?" (18)

23 June, 2023

HIFA Colleagues

Chris Zielinski referred to the UN/ECOSOC Committee General Comment no 14 (2000) on The Implementation of the International Covenant on Economic, Social and Cultural Rights, noting that the Committee stated that the right to health was “an inclusive right”, extending to the underlying determinants of health, and that among the determinants to health included was “access to health-related education and information”.

Neil added that the so-called International Bill of Human Rights lays down associated obligations:

'International human rights law lays down obligations which States are bound to respect. By becoming parties to international treaties, States assume obligations and duties under international law to respect, to protect and to fulfil human rights. The obligation to respect means that States must refrain from interfering with or curtailing the enjoyment of human rights. The obligation to protect requires States to protect individuals and groups against human rights abuses. The obligation to fulfil means that States must take positive action to facilitate the enjoyment of basic human rights...'

As Neil says, an opinion from a human rights lawyer could be helpful here, but it is worth noting that the UN Committee itself made some important comments about these obligations in specific regard to the right to health - starting with the comment that “the right to health includes certain components which are legally enforceable.” Their commentary went on to discuss

- The obligations of states

- Remedies and accountability

- Obligations of non-state parties

I have provided some extracts from the committee’s statements on these three topics at the end of this note. These were confirmed (and amplified) in 2008 in the UN/WHO Factsheet 31 on The Right to Health ( https://www.ohchr.org/en/publications/fact-sheets/fact-sheet-no-31-right.... ) , which aimed "to shed light on the right to health in international human rights law as it currently stands, amidst the plethora of initiatives and proposals as to what the right to health may or should be.”

Clearly implementation has fallen well short of these obligations (and remedies and accountability measures have been conspicuous by their absence - though a few interesting exceptions are noted in the UN/WHO Factsheet, including a court case in South Africa where a NGO successfully contested a government decision to restrict access to HIV treatment.

So, three issues:

- what actions could be taken to encourage, persuade or pressure states to fulfil these obligations in regard to universal access to the determinants of health, particularly health(care) information?

- would a World Health Assembly declaration about a right of (universal) access to (reliable) health(care) information (or even, noting Chris’s points, a WHA/UNESCO declaration on a more general right of access to essential information) form a useful component of such actions?

and, if so;

- how could HIFA best progress this with the WHO and other bodies?

Best regards

Geoff

Extracts from the UN/ECOSOC Committee General Comment No 14(2000) https://docstore.ohchr.org/SelfServices/FilesHandler.ashx?enc=4slQ6QSmlB...).

II. STATES PARTIES’ OBLIGATIONS

General legal obligations

30. While the Covenant provides for progressive realization and acknowledges the constraints due to the limits of available resources, it also imposes on States parties various obligations which are of immediate effect. States parties have immediate obligations in relation to the right to health, such as the guarantee that the right will be exercised without discrimination of any kind (art. 2.2) and the obligation to take steps (art. 2.1) towards the full realization of article 12. Such steps must be deliberate, concrete and targeted towards the full realization of the right to health.

36. The obligation to fulfil requires States parties, inter alia, to give sufficient recognition to the right to health in the national political and legal systems, preferably by way of legislative implementation, and to adopt a national health policy with a detailed plan for realizing the right to health. States must ensure provision of health care, including immunization programmes against the major infectious diseases, and ensure equal access for all to the underlying determinants of health

37. The obligation to fulfil (facilitate) requires States inter alia to take positive measures that enable and assist individuals and communities to enjoy the right to health. ……… The obligation to fulfil (promote) the right to health requires States to undertake actions that create, maintain and restore the health of the population. Such obligations include: (i) fostering recognition of factors favouring positive health results, e.g. research and provision of information; (ii) ensuring that health services are culturally appropriate and that health care staff are trained to recognize and respond to the specific needs of vulnerable or marginalized groups; (iii) ensuring that the State meets its obligations in the dissemination of appropriate information relating to healthy lifestyles and nutrition, harmful traditional practices and the availability of services; (iv) supporting people in making informed choices about their health.

44. The Committee also confirms that the following are obligations of comparable priority:

(a)To ensure reproductive, maternal (pre-natal as well as post-natal) and child health care;

(b)To provide immunization against the major infectious diseases occurring in the community;

(c)To take measures to prevent, treat and control epidemic and endemic diseases;

(d)To provide education and access to information concerning the main health problems in the community, including methods of preventing and controlling them;

(e)To provide appropriate training for health personnel, including education on health and human rights.

REMEDIES AND ACCOUNTABILITY

59. Any person or group victim of a violation of the right to health should have access to effective judicial or other appropriate remedies at both national and international levels. All victims of such violations should be entitled to adequate reparation, which may take the form of restitution, compensation, satisfaction or guarantees of non-repetition. National ombudsmen, human rights commissions, consumer forums, patients’ rights associations or similar institutions should address violations of the right to health.

60. The incorporation in the domestic legal order of international instruments recognizing the right to health can significantly enhance the scope and effectiveness of remedial measures and should be encouraged in all cases. Incorporation enables courts to adjudicate violations of the right to health, or at least its core obligations, by direct reference to the Covenant.

61. Judges and members of the legal profession should be encouraged by States parties to pay greater attention to violations of the right to health in the exercise of their functions.

62. States parties should respect, protect, facilitate and promote the work of human rights advocates and other members of civil society with a view to assisting vulnerable or marginalized groups in the realization of their right to health.

V. OBLIGATIONS OF ACTORS OTHER THAN STATES PARTIES

63. The role of the United Nations agencies and programmes, and in particular the key function assigned to WHO in realizing the right to health at the international, regional and country levels, is of particular importance, as is the function of UNICEF in relation to the right to health of children. When formulating and implementing their right to health national strategies, States parties should avail themselves of technical assistance and cooperation of WHO. Further, when preparing their reports, States parties should utilize the extensive information and advisory services of WHO with regard to data collection, disaggregation, and the development of right to health indicators and benchmarks.

HIFA profile: Geoff Royston is an Independent Health Analyst and Researcher, former Head of Strategic Analysis and Operational Research in the Department of Health for England, and Past President of the UK Operational Research Society. His work has focused on informing the design, implementation and evaluation of policies and programmes in health and social care, and on fostering the capabilities of others to work in these areas. Associated activities have included modelling for understanding the performance of complex systems, analysis and communication of risk, and horizon scanning and futures thinking. He has also worked on information and communication technology in the health sector, notably in leading the design and national launch of the telephone and online health information and advice service NHS Direct. He has served on both scientific and medical UK Research Council panels, and as an impact assessor for the UK higher education Research Excellence Framework. He is a member of the editorial board for the journal Health Care Management Science and in 2012 was Guest Editor for its special issue on Global Health. He has been a consultant for the World Health Organisation, is a long standing member of the EURO Working Group on Operational Research Applied to Health Services, and is an expert adviser to the mHIFA (mobile Healthcare Information for All) programme. http://www.hifa.org/projects/mobile-hifa-mhifa He is also a member of the main HIFA Steering Group and the HIFA working group on Evaluating the Impact of Healthcare Information. http://www.hifa.org/support/members/geoff geoff.royston AT gmail.com