The COVID-19 pandemic has brought questions around global healthcare financing and equitable access to treatments to the fore. But this is not the first time a spotlight has been thrown on the thorny issue of fair resource allocation in efforts to tackle global health issues. In her book, “The Uncounted: Politics of Data in Global Health” (Cambridge University Press), Dr Sara Davis considers how human rights issues can affect the data which underlie global healthcare funding. She looks closely at the indicators which drive resource allocation, the metrics used to measure success in tackling health issues, and the people whose experiences healthcare data often fails to capture. Ultimately, in a world of finite resources, this data plays an important role in determining who is more likely to live or die.

Interview with: Sara Davis (Graduate Institute of International and Development Studies, Geneva)
Host: Natasha Holcroft-Emmess
Producer/Editor: Christy Callaway-Gale
Executive Producer: Kira Allmann
Music: Rosemary Allmann

TRANSCRIPT (PDF)

TRANSCRIPT:

The Politics of Data in Global Health (with Sara Davis)

 Natasha Holcroft-Emmess (0:11): Welcome to RightsUp RightNow, a podcast from the Oxford Human Rights Hub. I’m Natasha Holcroft-Emmess. Today I am speaking with Dr Sara Davis, an author, consultant and special advisor in the Global Health Centre at the Graduate Institute in Geneva.

The COVID-19 pandemic has brought questions around global healthcare financing and equitable access to treatments to the full. But this is not the first time a spotlight has been thrown on the thorny issue of fair resource allocation in efforts to tackle global health issues. In her book, “The Uncounted: Politics of Data in Global Health”, recently published by Cambridge University Press, Dr Davis considers how human rights issues can affect the data which underlie global healthcare funding. She looks closely at the indicators which drive resource allocation, the metrics used to measure success in tackling health issues, and the people whose experiences healthcare data often fails to capture. Ultimately, in a world of finite resources, this data plays an important role in determining who is more likely to live or die.

Today, we will be speaking about how human rights can help to shape global healthcare financing policies. Dr Davis, thank you for joining us today.

Dr Davis (1:51): Thanks so much for having me.

Natasha Holcroft-Emmess (1:52): Perhaps we can start by unpacking the title of the book a little. We’ll come on to talk about “the uncounted” but let’s focus first on “global health” and “the politics of data”. Data collection and analysis appear to be technical matters for expert statisticians. Can you explain briefly why you regard these as political?

Dr Davis (2:14): Yeah, absolutely. I think what I mean is that data may appear neutral — we think of health data as being objective — but the kinds of data that get gathered and how that data is used to make decision[s] is very much shaped by the political and economic context that drives poor health, and in fact, the legal environment.

So when I think about HIV, for example, we have these ambitious global goals — we set the Sustainable Development Goals, all UN Member States agreed to these, including one to end HIV by 2030 — which was in part, I think, because of global fatigue with the HIV response and a desire by many donors to find an exit strategy so that they wouldn’t have to continue to finance programmes to address HIV. And the problem that we’ve had is that we’ve had this commitment to end HIV, but the funding is just not enough, and financing global development aid for HIV has flatlined and is even declining.

So in order to set priorities, donors and health agencies have had to try to decide which countries to focus their funding on, which interventions to focus on, and this often means focusing on the needs of the so-called “key populations” — sex workers, men who have sex with men, transgender people, people who use drugs — and in many countries, and especially, unfortunately, in the middle-income countries where aid agencies are now withdrawing their support, those governments are not necessarily prioritising services for stigmatised and criminalised populations, such as sex workers or people who use drugs. So no data is gathered about those populations — they’re not a priority for health services. The lack of data reinforces the invisibility of those groups, and HIV is on the rise as a result.

Natasha Holcroft-Emmess (4:02): Is it a case that the data goes towards the prioritisation of where certain funding goes? And/or is it that there are different options that are basically political decisions, and the data rules out certain options, as opposed to other options?

Dr Davis (4:20): Yeah, great, great questions. It’s a little bit of both. So countries create national HIV strategies in which they set out — it should be based on the epidemiological data — where they’re going to focus their funding, what they see as priorities, how they’re going to ensure that funding reaches people, and the interventions that are most important in terms of bringing HIV under control. But if you don’t have data on certain populations or certain issues, those problems and those populations remain invisible.

So for instance, if you have a government that criminalises same-sex sexuality— I did one study that looked at data on men who have sex with men in countries where there are criminal laws that make same-sex sexuality illegal, and they had very, very small estimates of the number of men who have sex with men in those countries, because those people are naturally hiding, very sensibly, because they don’t want to get arrested. So when you have a disfavourable legal and political environment, you wind up having data that doesn’t accurately reflect the need, and you may wind up having data that understates the need and understates the size of the population, and that will affect the national strategy, and it’ll affect where the money goes.

Natasha Holcroft-Emmess (5:31): Just taking it back to the very basics. What is global healthcare funding? And how does it work to address public health issues?

Dr Davis (5:38): Yeah, so this is something that a lot of people aren’t really aware of. But basically, the International Covenant on Economic, Social and Cultural Rights, which is one of the core human rights treaties, which has been signed and ratified by most countries, states that everyone has the right to the highest attainable standard of physical and mental health, and that States should try to make deliberate steps towards fulfilling this right for everyone, and should dedicate the maximum available resources towards programmes to ensure that at least a minimum basic standard of health services is accessible to everybody.[1]

But many countries, of course, don’t have enough money to meet that minimum basic standard and so they rely on overseas development aid, which is basically wealthier countries helping those that have less resources. So for HIV, Tuberculosis [TB], Malaria and many other diseases — I’m sure now it will be also the case with COVID-19 — this aid is absolutely essential to funding national health programmes. And it comes from the taxes paid by people in wealthy countries, like the US, the UK, Japan, [the] European Union, and helps to save lives in less wealthy countries. So it’s kind and generous to do this, but it’s also enlightened self-interest, because it’s good public health if we save lives in one part of the world, it’s good for the health of people in other parts of the world because we’re all connected, as we’ve seen with COVID-19.

Natasha Holcroft-Emmess (7:02): Okay, so we’re principally looking here at healthcare financing through aid programs. What kinds of bodies tend to do this work?

Dr Davis (7:11): Yeah, so the answer to that really depends a lot on the country. Normally, yes, you do have a national health ministry that is managing hospitals and clinics, managing public health for the country. In some countries that have a weak national health system, like my own country, the US, you have a lot more private hospitals and clinics that are operating more independently. And in many countries, it’s a mix of both public and private agencies.

Natasha Holcroft-Emmess (7:38): And do these domestic actors make up or work with healthcare funding bodies at the international level?

Dr Davis (7:44): That’s a very good question. So some of the funding is coming from bilateral aid agencies — so like DFID [Department for International Development] in the UK, or USAID [United States Agency for International Development] or PEPFAR [President’s Emergency Plan For AIDS Relief] in the United States, JICA [Japanese International Cooperation Agency] in Japan — but some of it, a lot of it, is pooled for HIV, TB and Malaria through an agency called the Global Fund to Fight Aids, TB and Malaria, which was established, well, like maybe 15 years ago now in response to the global mobilisation of people living with HIV, and their allies and families, to demand access to treatment.

So the Global Fund is probably almost unique in that it’s both a mix of the donor governments — so the UK is a very important presence on the board of the Global Fund, the US (of course), France — but also of implementing governments — so African governments, Asian, Latin American, Caribbean, etc. — and also some of the private sector, private foundations like the Bill and Melinda Gates Foundation. And, uniquely, the Global Fund also has representatives from civil society and affected communities, people living with HIV, affected by TB and Malaria— they have an equal vote on the board and they get to sit at the table alongside the UK, the US, Gates Foundation, Big Pharma and exercise a vote alongside them. It’s really unique, and it’s one of the things I really explore in the book, their role.

Natasha Holcroft-Emmess (9:05): How is the performance or achievement of these kinds of funding bodies in tackling healthcare conditions measured?

Dr Davis (9:13): It’s really interesting how they do this because one of the things that happened, I think, in the past 20 years is we’ve really seen the rise of what’s called “audit culture”, the idea that we should be— everything should be transparent, everything should be audited, quantified, measured and checked. And for the aid sector, this really, kind of, accelerated beginning in 2005, with the Paris Declaration on Aid Effectiveness, where aid agencies made a shared commitment to showing results into mutual accountability for aid. And to do this aid agencies have begun to adopt a lot of tools from the private sector; so they now have strategies, they have key performance indicators, they use cost effectiveness tools, they talk about investing for impact and maximising results, and that kind of very “private sector-y” kind of language.

But what’s interesting is that the indicators for health and for HIV are still very much being contested and worked out. And so one of the things I looked at is how these are debated and contested and negotiated among different sectors. So Sweden may have one set of indicators that they feel are important based on their foreign aid priorities, the UK might have a completely different set of priorities, or maybe there’s some overlap, maybe they all agree on gender equality as something they want to prioritise. But then how do you measure something like gender equality or human rights, or access to services for key populations? It’s not always as straightforward as it seems. And so it’s been very interesting to watch the evolution and the debates over what the indicators should be and how they get measured.

Natasha Holcroft-Emmess (10:49): In your book, you say that “where the funding goes, in the end – who lives or dies – comes down to data.” It’s a very powerful statement. What makes data such an essential component in decision-making about healthcare financing and resource allocation?

Dr Davis (11:07): Yeah, I think that’s a very interesting question because it comes back to this rise of audit culture, and of [the] sort of metrics and very quantified forms of accountability that’s happened everywhere, I think in every sector. For instance, when I started a civil society group, Asia Catalyst, back in 2006, you know, we barely had to do any M&E [Monitoring and Evaluation], no one ever asked us for monitoring and evaluation reports. And now you cannot run an NGO without having an M&E officer, and it’s one of the core things you have to fundraise for and somehow cover to keep donors happy. So all throughout the system, I think we’ve increasingly moved towards greater transparency and accountability, which is good, but increasingly relying on trying to quantify things and sometimes things that are quite difficult to quantify.

And what’s interesting when you look at the human rights issues— As the Senior Advisor on Human Rights at the Global Fund, I had to develop the first key performance indicator for human rights and coming as an anthropologist, working in human rights for years, I was used to thinking of evidence and data as testimony and laws and evidence that we could gather from interviewing people. So it was very focused on words and written evidence, sometimes photographic evidence, but we really hadn’t done much work to think about how you quantify the impact of those laws on health. And it was a real clash of cultures to try to adapt and bring human rights people along in this journey of adapting human rights thinking into terms that could be quantified and measured. And I’m not sure that we really have found the right answer to that problem yet.

Natasha Holcroft-Emmess (12:45): Let’s dig a little more into the data that’s used and the gaps that you identify in it. What sort of indicators do funding agencies use to determine eligibility for global healthcare financing?

Dr Davis (12:58): Yeah, so one thing that’s interesting is that, for a lot of the agencies, we don’t actually know how they determine which countries are eligible. So for instance, for the UK — and it will be even more so now with the changes that are happening with the UK aid system — but also the same is true for USAID, for [the] European Union, France— We don’t know how they decide which countries they’re going to give financing to. And sometimes it’s because these are countries they have a long standing relationship with, or it’s countries that they think are a priority because there are people in Parliament who want to see money going to these countries. So it’s not always transparent how countries are made eligible for HIV, TB and Malaria funding.

Because the Global Fund is a publicly funded agency, they have to go through a process with their board, their governance board, to agree on their eligibility policy, and that’s a very transparent process in which they negotiate and agree on criteria. And one of the criteria is national income, so grouping countries based on national income levels, and another set of criteria have to do with— for the countries that are middle-income that may or may not qualify— sorting through them based on their levels of HIV, TB and Malaria. But the problem is that there are huge gaps in data, and so making these determinations is often extremely challenging, and especially if that data rests on governments’ recognition of the needs of criminalised key populations — they may not have that data at all.

Natasha Holcroft-Emmess (14:30): Some of the metrics used are financial ones, like national income. Why do you say that some of these indicators are not well suited for use in healthcare financing?

Dr Davis (14:42): Yeah, so one challenge is measuring eligibility based on national income. So the Global Fund’s eligibility policy, one of their metrics is the GNI per capita, Gross National Income per capita. So Gross National Income per capita is a metric that the World Bank reports on annually, and it’s a calculation of the value produced domestically and from abroad, and based on this income, they classify countries as low-, middle- or high-income countries.

And the problem is that this is one number, and it’s produced usually over— about halfway through the year, based on data from the year before. So it just tells you how much income there was in the country, and it doesn’t tell you how much money is actually set aside for health; so, what the tax policy is, what the country’s indebtedness is, inequality within the country. So you may well appear to have, you know, a middle-income country, but that middle-income could be based on a very small number of individuals or enterprises that have a lot of wealth, and it doesn’t mean that they’re using any of that wealth to finance health for criminalised and hidden groups. And so the challenge is that it’s almost as if a bank was assessing your eligibility for a mortgage based solely on your annual income without looking at what your debt is, or any other savings you might have set aside.

But the Global Fund is using this as one of its key criteria to group countries, and this has been a huge point of contention, and especially because some of the donors on the Global Fund board would like to narrow the list of countries that are receiving funding to focus their money on a smaller subset of countries and to gradually eliminate (probably) their funding for the three diseases, whereas the civil society groups and communities are fighting to expand the list of countries to make sure that more people are reached. So it’s a contest every time this policy is reviewed.

Natasha Holcroft-Emmess (16:41): What would you say is the role of human rights in collecting this kind of data?

Dr Davis (16:45): I think the human rights issues are to some degree addressed when we think about the rights of individuals in collecting data — so our rights to privacy, informed consent. I think that there’s probably more work that needs to be done in the current environment, in which more and more of our personal data is being gathered by tech giants and private sector.

But I don’t know that there’s been enough thinking by human rights scholars about this problem of setting priorities in global health aid, or in any other kind of aid, because I think at the moment that eligibility and priority setting is really done based on foreign policy agendas and the agendas of a fairly small group of countries, and I don’t think we’ve really figured out yet what a human rights-based approach to priority setting is in contexts of limited resources.

Natasha Holcroft-Emmess (17:39): We talked a bit about them briefly, but which groups would you say are particularly vulnerable to being uncounted in global health data? And why?

Dr Davis (17:49): I think the answer to that is different for each disease and for each health issue that we look at. For HIV, it’s very clearly the populations who are most biologically vulnerable, and vulnerable based on behaviour, and vulnerable based on the criminal law, and that is transgender people, non-binary people, drug users, sex workers. For those groups, and also to some degree, also for migrants I would say, it’s extraordinarily challenging to get data, to get accurate estimates of the size of those populations, because they are living double lives in many cases, and their continued security and ability to survive depends on their ability to maintain plausible deniability from most people in their lives about who they are and what they do.

But I would imagine, when we start to look at other diseases and with other health issues, who is the “uncounted” would be a slightly different problem. So for instance, for COVID-19, I think we’re going to see that a lot of the people who are most vulnerable to COVID are people who are mobile and displaced people, who are living in conditions of overcrowding, who are not able to access health services easily but who have to continue to go out, move around and work in order to survive.

Natasha Holcroft-Emmess (19:07): And what’s the impact on these groups if there is a lack of transparency around health data or a failure accurately to estimate the number of those populations? And I guess one of the difficulties, or one of the things that will make the impact bigger on these groups is if they don’t feel like they have someone they can trust to reach out to, in order to become part of the data.

Dr Davis (19:32): Yeah, and the process of winning that trust is a slow one, and it requires investment. So one thing that I did in the book is I spent some time doing ethnographic study in the Eastern Caribbean, in Grenada, a former UK colony actually and also French colony at one time. And in Grenada, there had been some funding for civil society groups that were working with men who have sex with men and sex workers, but that funding had been abruptly terminated because Grenada was no longer a priority, because it was an upper middle-income country, and so the funding had been taken out on very short notice, civil society groups had basically collapsed. And when the study that I was observing began, it was a study of HIV in the country, they had to do a lot of work to really rebuild trust, re-establish the networks, and some of the people that they reached out to were, frankly, sceptical and felt, “Why should I talk to you for this study, because you’re just going to take my information, and then I’ll never see you again. I want to get something more than data in exchange for my participation in this project.”

And so that investment in community-based organisations is really, really important to sustain in order to enable you to not just reach the people to get their data but also continue to reach them, to get them tested, to give them health information and support. It’s all grounded in trust and trust takes time.

Natasha Holcroft-Emmess (20:59):  One way of protecting populations that are particularly vulnerable to being overlooked or excluded is to make considerations about human rights more central to the kind of decision-making that we’ve been discussing here. What would you say is the role that human rights can play or should play in designing public health measures to ensure more equitable healthcare financing and provision?

Dr Davis (21:23):  I think there’s many different answers to that question. One of the things that I think is really important is the right to participation — so the right to— of affected communities to have a voice in designing and evaluating interventions that are meant to save their lives. And I think, with the HIV response, there’s been a lot of work done to try to integrate that kind of community role in governance, in health decision-making at both the national level and in the governance of global agencies, like the Global Fund, UNAIDS (which is the UN agency that manages HIV programmes) and others.

I think we now need to be thinking about how to take that lesson into other areas of health governance, and I’m especially concerned at the moment with this rise of digital technologies, which we’re seeing accelerating even faster with COVID-19, and how do we ensure that there’s some transparency and accountability for use of these technologies, to gather our most sensitive and private health data? And how can we ensure that everyone whose data is being gathered actually has some sense of what’s being done with our data and whether we agree to it? So I think that’s something that we can take from the HIV sector, and probably start thinking about applying more broadly.

Natasha Holcroft-Emmess (22:42): It’s been reported that COVID-19 disproportionately affects populations that are already vulnerable due to pre-existing social, ethnic and gender inequalities. What do you think are the key lessons that we could have learned to avoid this? And what lessons should we learn for the future?

Dr Davis (23:00): Yeah, I think we’re still just beginning to understand how COVID-19 is going to affect people who are most marginalised. And it’s clear that certainly people who were already mobile and displaced populations — migrants, people displaced for humanitarian reasons, natural disasters — are facing huge vulnerabilities. And in my podcast, which is called “The Right On!” podcast, we’ve been talking to different human rights activists who are speaking to these issues — for instance, women and girls in displacement in Kenya who are highly vulnerable to sexual violence, or migrant workers in Singapore who were missed by the contact tracing app there. So I think, in terms of what we could learn from the HIV response, again it’s this really paying attention to who is most likely to be left behind, and left out, and consulting with them as we think about policies and how those should be designed. So for example, when you have very abrupt lockdowns for persons who are in straitened circumstances, there’s no way to like stock up on food, for example, or to socially distance at home, and so policies really have to take account of these very specific needs because otherwise we’re never going to get the epidemic under control.

Natasha Holcroft-Emmess (24:17): The book talks about certain countries using biometric tools to generate better data about healthcare service coverage for certain populations and the pushback against this by activist groups. Are there some parallels with the use of technology like track and trace apps for COVID-19?

Dr Davis (24:36): Yes. So, I spent some time with some community groups that were resisting use of biometrics in an HIV study in Kenya — which is also discussed in the book — and I think those examples are really interesting and important because they really speak to— beyond privacy— there’s a lot of other ways in which data gathering can expose us to risks. So for people who are vulnerable to HIV, again, these groups who are criminalised, there is a huge reluctance to engage with or to give biometric data such as fingerprints or iris scans in the context of an HIV study because they were afraid that it would be turned over to the police, and also afraid that that data might be used for other purposes, in the future, if the government was unfriendly to them. So I thought that was [a] really interesting example of resistance.

And I also am seeing some discussion and concern about contact tracing and using mobile apps for this purpose. For instance, in Singapore, which many of us thought was a super successful example of using tech in the COVID-19 response, in fact, many people have been reluctant to download and use the Trace Together app that the Singaporean Government has promoted, apparently, in part, because they’re concerned about it accessing data that is on their phones, that might include pornography or other stuff, that they don’t want the government to see.

Natasha Holcroft-Emmess (26:02): In relation to ending the AIDS epidemic, it was pledged in the Sustainable Development Goals that no one should be left behind. In a world of finite resources, how can we make sure that this ambition is achieved, and that no one is left behind?

Dr Davis (26:17): I think that’s the $10 million question, and I think one of the things we have to do is rethink our priorities, both in terms of rethinking what we put first as a society, but also in terms of how we do priority-setting in health when we have limited resources, which has really been the problem with COVID-19, right? So first, we haven’t prioritised health and so all our health systems are just inexcusably weak, and we’ve seen this especially in the US and the UK, that were just shamefully failing to get the epidemic under control as compared to some other countries that have less generous resources to address health with.

But the other thing we need to do is to design health systems and health interventions in a way where we think about the needs of those most marginalised and those most likely to be left behind first. So my friend, Rico Gustav who runs— is Executive Director of the Global Network of People living with HIV (GNP+), has a phrase, “putting the last mile first”. So if we think about the people we’re most likely to miss first, and design health systems around their needs, then it’ll meet the needs of everyone. So it’s really about changing what we put first, and really inverting our priorities, if we want to really not just deal with the current epidemics and pandemics, but also with the ones that we don’t even know about yet that are coming for us soon.

Natasha Holcroft-Emmess (27:41): Are there things that we as individuals can do to call for more equitable distribution of resources in global healthcare?

Dr Davis (27:48): Well, I think those of us who live in high-income and upper-income countries that are contributing to health aid, we have to think about who we elect and who we elect to represent us, and what we— messages we send them in terms of what priorities should be for the use of our taxes. I think that’s absolutely critical.

And the other thing is, I think to inform ourselves and keep ourselves informed about our fundamental human rights, about health because we can only empower others if we first empower ourselves to be able to advocate effectively. So I guess let’s start there.

Natasha Holcroft-Emmess (28:30): Thank you so much for a fascinating discussion and many congratulations on publishing the book.

Dr Davis (28:35): Thank you so much, Natasha. It’s such a privilege and I really appreciate it.

Christy Callaway-Gale (28:49): RightsUp is brought to you by the Oxford Human Rights Hub. The Executive Producer is Kira Allmann. This episode was produced and edited by me, Christy Callaway-Gale, and it was hosted by Natasha Holcroft-Emmess. Music for this series is by Rosemary Allmann and Show Notes for this episode have been written by Sarah Dobbie. Subscribe to this podcast wherever you’d like to listen to your favourite podcasts.

[1] Specifically, Article 12 of the ICESCR provides:

1. The States Parties to the present Covenant recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.

2. The steps to be taken by the States Parties to the present Covenant to achieve the full realization of this right shall include those necessary for:

(a) The provision for the reduction of the stillbirth-rate and of infant mortality and for the healthy development of the child;

(b) The improvement of all aspects of environmental and industrial hygiene;

(c) The prevention, treatment and control of epidemic, endemic, occupational and other diseases;

(d) The creation of conditions which would assure to all medical service and medical attention in the event of sickness.