Whose Needs? Reflections on Health Information and Minorities

Illustration: Indigo Trigg-Hauger / PRIO

The funding was granted in response to criticism of official communications about how the virus is transmitted, symptoms and government-imposed restrictions: In the Norwegian daily newspaper Vårt Land, Loveleen Brenna stated that

“[the communications] use foreign words , bureaucratic language, and the message doesn’t get through. In addition, there are references to official bodies and institutions that many people aren’t familiar with”.

Following the funding announcement, questions have been asked about the choice of recipient organizations, bearing in mind their influence in Norwegian-Somali communities, among other things.

• What are the state’s human rights obligations to ensure that health information about coronavirus is provided in a non-discriminatory manner?
• How far do these obligations go?

This piece discusses the guidance provided by two UN sources regarding the state’s duty to ensure that all population groups have equal access to health information about pandemics.

In particular, we examine the guidance provided by the UN’s International Covenant on Economic, Social and Cultural Rights (“ICESCR”), Article 12, and General Comment No. 14 (2000) of the UN’s Committee on Economic, Social and Cultural Rights (CESCR) on the right to the highest attainable standard or health (“General Comment 14”). We examine the close links between the right to health, the right to information, and the right to non-discrimination.

What is the right to health and what is the nature of the duty to provide information?

Regarding the right to health, Article 12 of the ICESCR states

“…everyone [has the right] to the enjoyment of the highest attainable standard of physical and mental health.”

The right to health is also embedded in the following UN conventions: the Convention on the Elimination of all Forms of Discrimination Against Women (CEDAW); the International Convention on the Elimination of All Forms of Racial Discrimination; the UN Convention on the Rights of the Child (UNCRC); and the Convention on the Rights of Persons with Disabilities (CRPD). The right to health must be realized without direct, indirect or structural discrimination.

The state should ensure that all citizens, regardless of social status, ethnic affiliation or other personal characteristics linking them to specific social groups, have physical and financial access to institutions that can provide healing, care and relief. In order to achieve this, the state must ensure that everyone has equal access to health information. On the right to health information, General Comment 14 at paragraphs 43 and 44 (e) notes that the state has a duty to

“[P]rovide education and access to information concerning the main health problems in the community, including methods of preventing and controlling them.”

Individual states should employ all available resources to ensure that all their citizens enjoy the highest attainable standard of health. According to Article 2 in the Covenant the State Parties:

”undertake to guarantee that the rights enunciated in the present Covenant will be exercised without discrimination of any kind as to race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status.”

Discrimination that is caused by interplay between groups characteristics like ethnicity, social status or age – so-called intersectional discrimination – is also included. The state thus has a duty to respect, protect and realize its citizens’ right to health without discrimination.

The duty to realize this right means that the state must employ a broad spectrum of measures to ensure that the right becomes a reality for all. It is this last consideration that is relevant to the rights of people belonging to minority groups with low social status to health-related protection from, and information about, the spread of coronavirus without direct, indirect, intersectional or structural discrimination.

What does the requirement for accessible, understandable and satisfactory health information involve?

One challenge that arises in connection with an epidemic of a life-threatening disease such as coronavirus is to ensure that minority groups, who may be placed by their social, economic and cultural circumstances in vulnerable situations, receive relevant and up-to-date information, which is communicated in such a way that it is understood and relevant to their life situation.

This is where the general human rights principles concerning the realization of rights are relevant. General Comment 14, paragraph 12 requires that health services must be accessible, understandable, quality-assured, and appropriate. The CESCR’s General Comment 22 on the right to sexual and reproductive health (2016), clarifies in more detail what this means for the right to health information.

A general requirement concerning the accessibility, comprehensibility and relevance of health information, as set forth in General Comment 22 at paragraph 19, is that the information must address the needs of different individuals and groups and take account of age, gender, language ability, educational level and possible disabilities.

These rights are supplemented by the right to participate in the development of health and health-information measures. General Comment 14, at paragraph 11, explains in greater detail how the right to health covers health-related education and information, as well as participation in “all health-related decision-making at the community, national and international levels.”

What does the duty to provide information involve in the context of coronavirus?

To achieve real equality, account must be taken of social, economic and cultural differences, as set forth in General Comment 22 at paragraph 19.

While formal equality require that like cases are treated alike, real equality require that different cases are treated differently. Experience tells us that an information strategy that on paper appear as the same for all, may have different effects and outcomes for different population groups and as such result in indirect discrimination. The current situation involves disseminating information intended to prevent the spread of a deadly disease, and disseminating that information to groups who are particularly vulnerable to the disease. Accordingly, the authorities must be aware of the need to avoid implementing information measures that have an unequal effect. Within the scope for action of a national government — a scope that we must assume to be broad in a crisis situation – it will be up to national authorities to decide what information measures to use with a view to prevent the spread of the virus.

Here we outline six considerations regarding dissemination of health information that are of key importance for realising the right to health:

1. Firstly, it is generally important that plans for national health preparedness and preventive activities integrate a diversity perspective in advance of a crisis. For a number of years, the OMOD Centre for Social Justice has called attention to the fact that Norway’s national preparedness planning for pandemic influenza did not take account of the diversity of Norwegian society. Also, during the 2009 swine flu pandemic, OMOD called for “a unified communications strategy that has its basis in established institutions and can be used in an effective manner.” Diversity is still not entrenched in national preparedness planning. For several years, the various UN committees that monitor Norway’s compliance with its human-rights obligations have called for better information about the social and economic rights of various immigrant groups, both in relation to information about health rights and discrimination against ethnic minorities in the health service.
2. Secondly, information strategies – if they are to be effective – must be based on knowledge about the kinds of information channels that are appropriate for reaching different population groups. The state’s duties must be balanced against the duties and responsibilities of individuals to take their own steps to gather information. Social media and translation technology have made information more accessible to individuals, while at the same time this technology makes it easier and cheaper for the state to reach different groups. Nonetheless, we must bear in mind that many people are not competent users of digital media, and people’s abilities to access online information vary. When evaluating relevant information channels, it is also important to consider people’s jobs and how the business sector is structured. For example, what channels are suitable for reaching groups such as taxi drivers, bus drivers, health workers, shop workers or cleaners? What kinds of religious and semi-formal social gathering places are used by different minorities?
3. Thirdly, it is important that the information is translated into the languages spoken by different groups in the population. Measures to promote linguistic integration, including obligations and/or opportunities to take Norwegian language courses, cannot exempt the government from its duty to make information available in other languages for those individuals who have little knowledge of Norwegian. Among other things, applicants for Norwegian citizenship who are over 67 years old are exempt from the requirement to pass a Norwegian language test. Launching separate information campaigns in many languages is not enough. These campaigns must be disseminated via adequate digital, as well as analogue, channels. This obligation involves ensuring that posters carrying important information in the public realm (on buses, in public places, and in shops, for example) are supplied in a range of languages. Such information is particularly important in the neighbourhoods where most immigrants live.
4. Fourthly, it is of central importance that the information provided be adequate. This means that the information must be designed in a way that takes account of living conditions among various population groups. One important factor is home size, given, for example, that 38 percent of Norwegian-Somalis live in overcrowded accommodation. Bearing this in mind, information and guidance about how to avoid spreading infection must be adapted, as standard information about social distancing is not appropriate in such circumstances. Instead concrete information about what measures people who live in crowded areas may resort to is needed. Gender dynamics within the family, for example who is likely to bring the virus in and who is in charge of sanitation, cleaning and caring, must be taken into account. The requirement for information to be adequate also means that information must be up-to-date. Despite the fact that information translated into various languages was available on the Norwegian Institute of Public Health’s website on 16 March, there is much to suggest that efforts to reach immigrant groups in Oslo were far from sufficiently systematic and targeted in the period immediately after general measures were implemented on 12 March.Many people will find direct translations of public health circulars that uses a technical and formal language hard to understand
5. Fifthly, information about how one can protect oneself from infection should be communicated in a coherent and respectful manner. Many people will find direct translations of public health circulars that uses a technical and formal language hard to understand. There may also be a need to make a “cultural” translation of measures to prevent the spread of infection, with examples that are seen as coherent and relevant. Another potential challenge is that some people view sickness and death as events that are determined by fate, or sent as punishment for breaches of social, religious or cultural norms. In these cases, working with experts on different faiths and world views can help improve communication.
6. Finally, the content and structure of the information should be developed in collaboration with the affected groups. Campaigns that are based on one-way communication seldom succeed in reaching their targets. Active infection tracing, and local resources with linguistic competence and local networks, such as activity and service resources like the Multicultural Senior Centre, the “Neighbourhood Mothers”, Caritas Norway and the LINK office, are all examples of dialogue-based resources. Several of these organizations are located in Inner Eastern Oslo and have multilingual employees. They have good contacts among the relevant target groups. Neither immigrant organizations nor these organizations were included in the government’s grant to boost efforts by voluntary organizations to disseminate health information among Norway’s immigrant population.

• This piece is based on the translation of a Norwegian language op-ed that appeared on Rett24.no 10 April 2020, titled “Korona, minoritetsvern og statens plikt til å gi helseinformasjon”.
• Translation from Norwegian: Fidotext

About the authors

• Anne Hellum is Professor at the Department of Public and International Law at the University of Oslo.
• Kristin Bergtora Sandvik is Research Professor in Humanitarian Studies at PRIO and Professor at the Faculty of Law, University of Oslo.
• Tatanya Ducran Valland is a lecturer at the Department of Criminology and Sociology of Law, University of Oslo.
• Marta Bivand Erdal is Research Director and Research Professor in Migration Studies at PRIO.