Big Data and the Right to Health: Explaining Ourselves!

Editor’s note: This post forms part of a larger series addressing key issues related to human rights, technology and big data. 

In Work Stream Three of the Human Rights, Big Data and Technology Project, we are examining three overriding questions about big data and each of these we look at from a right to health perspective. In this blog we explain what does a ‘right to health perspective’ mean in this research.

Our three big data and technology questions are:

  1. Can technology, especially e(lectronic)-health, m(obile)-health and telemedicine, contribute to the targeting and practical operationalisation of health rights and if so, how?
  2. Can big data enhance the accountability of duty-bearers in relation to health-rights?
  3. Is big data generating evidence that human rights-shaped interventions contribute to health and other gains?

Briefly, the right to the highest attainable standard of health (or ‘right to health’) encompasses medical care, as well as access to safe water, adequate sanitation, a safe working environment, access to health-related information and education, and other critical pre-conditions of good health. Moreover, it places an obligation on governments to address discrimination and inequality. The right to health requires governments to enhance access for disadvantaged individuals, communities and populations; in other words, it has a social justice component. It also requires governments to put in place arrangements that facilitate the active and informed participation of those affected by health-related policies, programmes and practices. At the core of the right to health is an equitable, integrated, responsive, effective health system that is accessible to all and of good quality.

Crucially, the right to health is subject to progressive realisation, i.e. no government is expected to realise it overnight – or even in 10 years – but to progressively work towards its realisation. This means we need indicators and benchmarks to measure whether or not progress is being made. However, the right to health is subject to resource availability, in other words, more is demanded of Canada than Chad. Accountability – i.e. monitoring, review (including independent review) and remedial action – is a crucial element of the right to health. In practice, the same body is often responsible for delivering and regulating health-related services, as well as holding those responsible to account; from the right to health perspective, this is problematic.  National human rights institutions and civil society have an essential role to play in using information (from ethnographic stories to big data) to hold governments and others to account. This can be challenging in States that lack good information systems, or where freedom of information is curtailed.

Returning to our three questions, here we explain some of the specific considerations that a right to health approach would bring.

  1. Technology and e-health

Technological advances in health, including e-health, m-health, and telemedicine offer opportunities to provide health services and information to people, rapidly, and often without the physical presence of a trained health worker. They offer promise in terms of improving health outcomes – whether this is through reminders by mobile phone to take medicines, stop smoking, keep appointments, or by having an urban hospital-based radiologist read an x-ray taken hundreds of kilometres away at a rural clinic.

In collaboration with an e-health project we plan to use human rights to shape the intervention and ensure that it is in keeping with the country’s national health plans and systems – in this way, even when non-state health projects are delivered in a country, they work to support the government’s right to health obligations. A rights-shaped e-health project would then carefully select the region, locale, or target group to deliver the service so that it would help make health care more accessible, and reduce health inequities. With e-health, this would likely result in working in an area where health services were least available. One essential element of course would be the need for the area to have mobile phone coverage. Once an area or target group was selected, the intended recipients of the service would need to play a meaningful role in deciding whether they want the service and how they would like to receive it; their advice in understanding local issues would be critical to its successful implementation. Care needs to be taken throughout that there has been no unlawful discrimination in the selection of participants.

In time, we would examine the outcomes of the human rights-shaped project. Were the most marginalised and remote people, with poorest access to health care, best served by this initiative? Did e-health offer health care that was acceptable and of good quality? Did these outcomes also improve access to other rights entitlements, for example, better nutrition or improved work options?

If the e-health project had unintended consequences that increased inequality, or failed to improve health, we would make suggestions about how this poor right to health outcome could be remedied. Remedial action is an important feature of human rights.

  1. Can big data enhance the accountability of duty-bearers in relation to health-rights?

International human rights law places obligations (duties) to respect, protect and fulfil human rights primarily on States (governments). Governments are therefore called the duty-bearers. All people hold human rights entitlements, and hence are called the rights-holders. Accountability is a vital component of human rights; done properly, it should be a participatory process through which people can monitor, review and seek remedial action from their governments to have their human rights entitlements met.

In this second prong of our research, we turn our attention to accountability, and investigate the role that big data can play in holding governments to account for their human rights obligations. With our attention remaining on the right to health, we will be examining some recommendations made by the UN Human Rights Council through its Universal Periodic Review mechanism which reviews all countries’ human rights records every four years. The UPR recommendations ask governments to address pressing human rights issues, such as health inequalities. For this work we will use government data sets, and analyse far more precisely than has been possible in the past, who is and is not receiving health care, who is at greatest risk of living in unhealthy circumstances, and what action is needed to remedy these health inequalities.

An example of this might be that a country has been advised to improve the uptake of health services by an indigenous minority group. Overall results may show that after four years there has been an increase in the number of indigenous people using health services. We would then apply multiple data sets (big data) to understand more precisely who has used the services more. Is it, for example, the better educated, better off, and urban dwelling members of the indigenous peoples? Therefore we would look for:

  • Sex and age of health service users
  • Distance from homes to health facilities
  • Languages spoken at the health facilities
  • Literacy and education of women, men and children
  • Employment status and poverty levels
  • Costs of accessing health care (including transport and user fees).

The sources of this big data include Census and GPS data, inland revenue (tax and employment data), and ministries of education, immigration, and health. If the data analysis reveals that more remote, poorly educated, unemployed, and older indigenous women were using the health service less than other indigenous people, then the government would need to take steps to reduce these inequities. The government would be held to account by national human rights institutions and civil society, and they would have to report in subsequent UN reporting cycles, and in their own country, on the steps they had taken, and the outcomes.

We anticipate this research will demonstrate that big data allows greater transparency about the people whose health rights are not being met. Enhanced accountability should promote remedial action.

  1. Is big data generating evidence that human rights-shaped interventions contribute to health and other gains?

A human rights-shaped health intervention is one that aims to fulfil people’s health rights entitlements. A key feature is the active participation of rights holders in the design, implementation and accountability of the intervention. Further specific right to health elements include the increasing availability, accessibility (including financial accessibility, and that health information is more accessible), cultural acceptability, and of good quality health care.

Using big data we will look at health outcomes and beyond to measure what rights entitlements have been realised. For example, in a health intervention to improve women’s sexual and reproductive health, an immediate health outcome might be that more women have access to contraception, and fewer die in childbirth. A longer term, broader impact might be that the women’s children have better nutrition, health, and education as a result of having a mother who survived childbirth, and fewer siblings. The various data sets we might use to explore the outcomes and impact of a human rights shaped sexual and reproductive health initiative could be: health data from the ministry of health, education data from ministry of education, employment data from inland revenue, and civil registration and vital statistics data. The more a community and country uses electronic data for all its transactions, including financial transactions at the individual level, the more data there is to measure impact of interventions. Paradoxically, the countries with the highest rates of poor health and premature death are the ones with the least data to track impacts of health interventions.

We look forward to posting future blogs as our research collaborations and questions are finalised and results emerge.

Disclaimer: The views expressed herein are the author(s) alone.