Neil Pakenham-Walsh and Molly Land discuss their newly published white paper, Access to Health Information Under International Human Rights Law.
People are dying for lack of knowledge
Access to information is critical for the protection of a variety of international human rights, particularly the right to health. Lack of access to information, and especially to basic healthcare knowledge, continues to be a major contributor to avoidable death and suffering. Every day, tens of thousands of children, women and men die needlessly for want of simple, low-cost interventions – interventions that are often already locally available. Such interventions are often not provided simply because the person responsible for the delivery of health care at that moment – whether a parent or health worker – does not have access to the basic healthcare information they need in order to make the right decisions. Many child deaths, for example, are caused by delays in seeking care, and/or by misdiagnosis and consequent failure to provide appropriate treatment.
Information plays an essential role in protecting the right to health; lay and professional health care providers alike require information about medical care in order to provide health services. As one of us [N P-W] noted in a paper published in the British Medical Journal:
“Providing access to reliable health information for health workers in developing countries is potentially the single most cost effective and achievable strategy for sustainable improvement in health care.”
Our newly published white paper considers the scope of protection afforded to access to information under international human rights law. Although others have made human rights cases for access to health information in particular contexts, such as access to clinical trials data, this paper evaluates the legal support for access to health information in general – especially access to basic healthcare knowledge – and across a range of different rights.
Access to information is directly protected in some of the issue-specific human rights treaties. For example, Article 10(h) of the Convention on the Elimination of All Forms of Discrimination Against Women (Women’s Convention), explicitly requires states to provide “[a]ccess to specific educational information to help to ensure the health and well-being of families, including information and advice on family planning.” As a necessary precondition for the exercise of other rights, the fulfillment of information needs can also be protected as fully as the right itself. The Committee on Economic, Social and Cultural Rights (ESCR Committee), the international body charged with receiving state reports on their compliance with the ICESCR, has made clear in its General Comment No. 14 that the right to health extends “not only to timely and appropriate health care but also to the underlying determinants of health, such as . . . access to health-related education and information, including on sexual and reproductive health.” Thus, states must also protect access to information as an underlying determinant of the right to health and other rights.
Political and financial commitment is needed to address the information needs of citizens and health workers
Given the obvious importance of access to relevant, reliable healthcare knowledge, it is astonishing that the level of political and financial support for health information production, exchange and use in LMICs is so low – especially in Africa. The leading regional organisations for this purpose, the WHO African Regional Office and AHILA, the Association for Health Information and Libraries in Africa, run on a very limited budget. Indeed, almost every organisation worldwide that is involved in the production and availability of health publications in LMICs is severely constrained by lack of resources. Governments often neglect the role of information in promoting health and human rights.
At the global level, the World Health Organization recognises in its Constitution that:
“The extension to all peoples of the benefits of medical, psychological and related knowledge is essential to the fullest attainment of health.”
WHO is an essential global leader in the provision of reliable healthcare information for policy and practice, and yet is itself increasingly constrained by lack of financial resources.
Our new white paper argues that governments worldwide, and especially governments in LMICs, must recognise and fulfil their individual and collective responsibility to meet, progressively, the information and learning needs of citizens and health workers. Meeting these needs is fundamental to the broader progressive realisation of the right to health.
Neil Pakenham-Walsh is Coordinator of the Healthcare Information for All by 2015 (HIFA2015) campaign and Co-Director of the Global Healthcare Information Network. He can be reached at firstname.lastname@example.org.
Molly Land is Associate Professor of Law at New York Law School. Her research focuses on the intersection of human rights, information law, and intellectual property. She can be reached at email@example.com