I get particularly excited when I see Global Health issues being debated in mainstream magazines and newspapers, and since the outbreak of Ebola has captured global attention, there has been no shortage of such discussions. Perhaps that is why I am blogging again. Why, the mainstream media asks, can we not curb the spread of this deadly epidemic that is ravaging a few countries in West Africa?

Sadly, however, I think there has been too much of reacting to Ebola as though Ebola was just any other global health problem: Ebola is about Poverty, Ebola is about Globalization, or Ebola is about Culture. But Ebola is Ebola, and it is unique in some important ways.

In next week’s New Yorker’s James Surowiecki laments about the lack of treatments for Ebola. His article is littered from quotes that could come from just about nearly any global health piece on the challenges in developing new pharmaceuticals for neglected tropical diseases:

“The lack of an Ebola treatment is disturbing. But, given the way drug development is funded, it’s also predictable.”

“When pharmaceutical companies are deciding where to direct their R. & D. money, they naturally assess the potential market for a drug candidate. That means that they have an incentive to target diseases that affect wealthier people (above all, people in the developed world), who can afford to pay a lot. They have an incentive to make drugs that many people will take. And they have an incentive to make drugs that people will take regularly for a long time—drugs like statins.”

“But it also leads to enormous underinvestment in certain kinds of diseases and certain categories of drugs. Diseases that mostly affect poor people in poor countries aren’t a research priority, because it’s unlikely that those markets will ever provide a decent return. So diseases like malaria and tuberculosis, which together kill two million people a year, have received less attention from pharmaceutical companies than high cholesterol.”

It is true: poor people in poor countries are not profitable so there is not enough investment in drugs that disproportionately affect people in poor countries. Showing that he is up on the current literature on what works in global health, to remedy this problem Surowiecki recommends governments put forward the resources to incentivize more investment in R&D for Ebola, ideally through some mechanism like an Advanced Market Commitment program (read more about those here):

“The key is to reward companies for creating substantial public-health benefits. And the simplest way to do this would be to offer prizes for new drugs.”

While I would agree with most of this if we were talking about most diseases that disproportionately affected people in the developing world, like tuberculosis or malaria, I don’t agree for Ebola. Why? Simply put, I think we are overestimating the “substantial” public health benefits and that they are not likely large enough to justify the relatively large fixed costs associated with developing any new medicine (which are at least a few billion a drug). In particular, he ignores the fact that there is a relatively effective treatment for Ebola already on market: well functioning health systems.

Up until the current epidemic there had only ever been about 2300 cases of Ebola and 1500 deaths in a handful of countries over nearly 40 years. Add the additional 1200 deaths from this epidemic, and conservatively estimate the cost of a new treatment at $2 billion (in 2005, this article suggests at least this much would be required for an AMC to work), we are looking at more than $750,000 per life saved, ignoring discounting and net present values (these estimates are highly uncertain, but would probably need to be be off by at least an order of magnitude to change the conclusion). Very high for developing world standards, and these are drug costs alone.

Ebola is spreading throughout West Africa not because there is no known treatment, but rather because of the lack of investment in the health facilities, health workers, and health information systems that are required to detect, contain, and deal with Ebola. It is not even clear how many deaths in this current epidemic could have been averted even if a miracle drug had been available during this epidemic: without well functioning health systems this epidemic may have spread nearly as quickly and drugs may have arrived too late to have saved that many lives. In the case of Ebola, treatment is not prevention.

I don’t want to argue that there should be no investment in research for treatment for Ebola, and I am personally happy that there has been some and that there are a few potential drugs in existence (despite the lack of investment in an AMC). It is also great that Ebola is focusing more attention on global health and on health systems in general. But IF anyone was actually willing to donate a few billion in prize money to prevent the next epidemic of Ebola, my vote would be to pour it into health systems. It has been reported that in some of the treatment centers there is not even enough money to buy gloves for health workers to protect themselves from the disease: and those are only a few pennies a pop. Alternatively, invest that money in R&D for drugs for which the public health benefits are more clear – like malaria or tuberculosis. Both are likely to have more clear public health benefits in the long run.

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This is a cross-post with the Innovations for Poverty Action blog. I want to thank Jeff Mosenkis for asking me to write this post.

Yesterday an expert committee convened by the World Health Organization released a statement about the ethics of making experimental treatments for Ebola available to patients during the current West African outbreak. The panel unanimously concluded that it was, in fact, ethical for such treatments, which so far have never been shown to be effective, to be made available to patients given the existing circumstances and when particular conditions, for example informed consent and freedom of choice, are met. In essence: it would be unethical to withhold these treatments to wait for the rigorous randomized controlled trials that are typically done to establish effectiveness.

Due to many factors, there are currently no effective treatments approved for the treatment Ebola, nor any vaccine for its prevention. First, the actual number of people who have been infected by Ebola is small (a few thousand cases over 30 years), the people who get Ebola are poor and remote, and until recently most epidemics have been relatively easy to contain using existing surveillance and infection control.

Despite this, a number of “experimental” treatments are in various stages of development. The typical development cycle for new drugs involves multiple phases of evaluation in order to establish safety, efficacy, and ideally effectiveness of these new treatments in humans and in real world settings where these medicines are likely to be used. None of the treatments that are currently in development have undergone rigorous evaluation studies to establish if any of these treatments are effective. Until the most recent outbreak, there has also been another challenge to the development of a new Ebola treatment: in the time it would take to set up a proper study to test the effectiveness of treatment, infection control measures are so effective and Ebola itself so lethal, that localized epidemics have usually died out.

The current West African outbreak appears to be different: Ebola outbreaks were previously unknown in West Africa, the health systems in affected countries are particularly weak, national governments are particularly limited in their ability to respond, and the international response has been inadequate. Enough bad circumstances have been blowing enough wind to keep the embers of this epidemic burning, perhaps since as early as last December.

Two weeks ago we learned that two American health workers working in Liberia had contracted the virus, were extremely ill, and were being airlifted back to the US for treatment. But prior to their departure, they somehow were administered doses of highly experimental serum. A Spanish priest, the only other non-African to have also have contracted the virus, also received the treatment raising many eyebrows since among the thousands of people infected with the virus, only the white patients had received the treatment.

Images of Dr. Kent Brantly walking out of the ambulance and into a hospital in Atlanta, just days after receiving his doses of the experimental serum had many suggesting that these treatments were miraculous. Given that both Americans back in the US appear to be recovering has led many to suggest that these treatments are in fact effective. But before we jump to this conclusion, we must also consider the selection effects of who received the treatment and who did not. The Americans were of much higher socio-economically status than most of the Africans who contracted the disease, and all likely had better access to health care. In particular, since both Americans had been heroically treating patients with Ebola for months they would have easily recognized the symptoms would have been spotted and treated early. Yesterday we learned that the Spanish priest who also received the treatment died of Ebola in Spain. Our estimates of the effectiveness of this miracle drug just dropped from 100% to 67%.

The reason randomized controlled trials remain the gold standard in the evaluation of the effectiveness of new medicines is due precisely to the types of selection issues I describe above. The downside of randomized controlled trials is that to do them well, it takes time and, by definition, some ability to control who gets treatment and who does not. It has been suggested that waiting for the results from such studies is unethical when treatments may be available to save lives today. But why do these things need to be mutually exclusive?

There has never been such an opportune time to test the effectiveness of the treatments for Ebola due to the large number of patients with the disease. The WHO panel also acknowledged this in their statement; it would also be unethical to miss the opportunity to learn about the effectiveness of these studies during the current outbreak. Given that the experimental treatments are in such short supply, tough decisions will need to be made about who gets treatment and who does not. But if countries adopted some of the elements of RCTs into the scale-up plans, it might actually be possible to scale up treatment in a way that is both ethical and likely to generate the greatest amount of new evidence on the effectiveness of the treatments.

For example, we could randomly allocate treatments across the various treatment sites. And within treatment sites, a list of all patients in need of treatment could be drawn up and patients selected at random for treatment within the list. If well done well, neither of these strategies are likely to slow down the rollout process, cost significantly more money, nor necessarily be less fair than other methods of allocating limited resources. In the long run, these types of strategies might help to shed light on the effectiveness of treatments, which could make the ethical debates less challenging in the future.

Experimenting with human lives will always raise important import ethical dilemmas. But in the absence of good evidence about effectiveness, these decisions are even more ethically challenging. Generating rigorous evidence should therefore not be seen as being at odds with doing what is right, but rather the right way to learn about what is right.

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I’ll take of advantage of my sudden interest in blogging again, to share with you some exciting news (lets see how long this lasts). In September a new journal will be launched called “Health Systems and Reform”. The goal of the journal is to provide a new forum for academic reviews and analysis of health system issues. I have thought that there was a need for such a journal for a long time and so I am so happy to see it happen.

According to the publisher:

HS&R will provide cutting-edge academic analysis and critical review of national and sub-national public health, health policy, and management issues; comparative health system analyses; and health policy transfer and translation to a system’s local determinants. The journal will emphasize the analysis of health reforms in ways that advance understanding of the consequences and processes of reform in order to improve the performance of health systems and hence the lives of patients around the world.

As a health systems researcher, one with interdisciplinary interests, I have found it challenging at time to figure out where some of my work belongs. Medical journals are too clinical and many of the leading global health policy journals have strict word limits, making it hard to publish studies of complex health system issues. The journal will also be an open access journal. The first edition will likely be published around the time of the upcoming health systems research conference in Cape Town, so if you are going there (and yes, you should) then I am sure you will be hearing a lot more about it then. The first issue is more or less full but submission for the second issue is September 1, 2014. So get your papers ready and under review.

Personal disclosure: I was so thrilled about this new journal I also agreed to serve on the editorial board for the journal, so I might be a bit biased with regards to my views of this journal, in a geeky nerdy sort of way.

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At last, we finally care about Ebola…

On August 4, 2014, in infectious diseases, by Karen Grepin

I once read a quote in a book that stuck with me, I think it was in Hooper’s The River, that read something along the lines of: HIV did not become a global epidemic until the first white person died of this disease. I could not track down my copy of the book to confirm the source of the quote – perhaps that tome was ditched on one of my umpteen moves over the years due to size and weight – but you get the idea.

Last week, the Onion’s coverage of the Ebola hysteria perfectly summed it up: “Experts: Ebola Vaccine At Least 50 White People Away“. I laughed hysterically.

What everyone knows is that Ebola is now in vivo on US soil, perhaps for the first time in human history. Ebola news is everywhere – TV, newspapers, and radio shows are devoted tons of airspace to the newest global epidemic. But what everyone does not necessarily know is that this epidemic has been simmering for months – at least since March of this year (that is the little blimp ‘B’ on the figure below). At least a thousand people have contracted the disease and at least 700 hundred have died. But last week two Americans working in Liberia fell ill from Ebola and well, you can figure out where that is on the figure. Hooray! The (Western) world cares about Ebola, at least more than it has in at least 10 years. What was true for HIV, appears to have some truth with Ebola as well.

What is also notable is that fact that as soon as two Americans fall ill with the disease there is an experimental serum ready for testing in human subjects. Perhaps the silver lining of this round of the Ebola hysteria is that it might have pushed us towards making a giant leap forward towards developing an effective treatment, and perhaps one day a vaccine, for the disease. But the Onion may still be right about the need for a least 50 cases for that, though….

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Using DHS data just got a whole lot easier

On May 7, 2014, in data, research, by Karen Grepin

Yeah, the blog has been a bit dormant of late. It has been a busy year professionally and personally, leaving little time for the blog. But my excitement for a new research resource is so high, I figured it was worth breaking the blogging dry spell to tell you all about it.

As many of you know, I am an avid user of data from the Demographic and Health Surveys. In my mind, they are the single greatest resource in global health and yet they are remarkably underutilized. Part of the challenge is the learning curve that is required to go online, download the datasets and use them. In particular, if one wants to ask questions across countries or over time, it becomes even more complicated to download and utilize the data in that way. Over the years, I have developed code that allows me to quickly extract comparable data from the entire library of DHS files. I can do that because I know how to code, but this represents a great barrier to many people out there who want to use this data.

Which brings me to the new resources that I am so excited about: the newly released Integrated Demographic and Health (IDHS) resource from from IPUMS, the same folks that revolutionized the availability of international census data. The IDHS is designed to facilitate analysis of DHS data across time and across countries. Essentially, it has done the leg work to ensure that variables are coded consistently across countries and over time, has provided a web platform to allows the variables to be easily searched, and allows users to develop custom extracts. All of this at absolutely zero cost to the users.

The current version of the dataset only includes a subset of countries and surveys and it only includes the data on female respondents (i.e. the IR DHS files). But it is a work in progress and more will come soon. This morning, to see how it worked, I built a custom extract to look at cesarean section rates across countries over time. From when I activated my account to when I received the custom extract in my inbox, it took about 1 minute, or more like 2 as I had forgotten my password again. That happens a lot.

Innovations in open data is making the world a better place in so many ways. And with the research that will flow from these innovations, hopefully it will help make the world healthier too.

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That women, in particular poor, marginalized women, are denied access or mistreated during maternity care is not news. I would even be willing to bet that this is a pretty common event, happening hundreds, if not thousands, times a day, around the world but rarely are such events attract much attention.

Which is what makes the case of Irma Lopez, a poor Mazatec woman from northern Oaxaca state in Mexico so interesting. After traveling a long distance from her home to the local maternity clinic to deliver her baby, Mrs. Lopez was “kicked out of the clinic” by a nurse who claimed she was not yet ready to deliver.

But of course Mrs. Lopez was, and just moments later, Mrs. Lopez delivered her baby, on her own, on the lawn of the clinic. A passerby, perhaps with a camera phone snapped a photo of Mrs. Lopez with her baby still attached – a much more graphic version of what is above (that you can Google) – which subsequently went viral on the Internet and was on the cover of newspapers in Mexico. With the click of a camera, Irma Lopez went from forgotten to frontpage, and so did the topic of equity in maternal health services in Mexico.

Fortunately, this is also a story with a happy ending. After delivering, Mrs. Lopez was admitted to the same clinic and was discharged later that same day. Newspaper reporter Adriana Gomez Licon caught up with her and family later that week and everyone, including her new baby boy “Salvador” are doing fine.

The Director of the Center where Mrs. Lopez delivered has subsequently been suspended and investigations are underway to understand how such an event could occur. Many believe that discrimination was a big factor, which is supported by a growing body of literature that many women are treated disrespect and mistreatment is common at health facilities. This inequity might also represent a major barrier to facility-based deliveries.

But for me, the most interesting part of this study is how improved information was able to generate attention to this issue and led to action by local officials to do something about this situation and made me think of the potential of new technologies, such as the camera phone that took this photo, might have in addressing some of the problems in broken health systems.

I am off to Uganda tomorrow to help set up a new project with UNICEF-Uganda to crowdsource data on health care experiences with the image of Mrs. Lopez and her minutes old baby will remain etched on my brain for years to come.

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I feel like I’ve become a bit of a broken record lately as I’ve ended up in situations where I have to defend the need for more evaluation work in global health. And I do mean defend – not just advocate for more evaluation work – but rather be on the defensive against groups or people that have argued that there is currently too much evaluation work or that evaluation work cannot – or even should not be done. I disagree.

I’ve had to make this argument in different settings, but one area where I have been working lately is in the area of mHealth where a common argument I have heard about why we don’t need to do more evaluation work is that “we already know this works” or because most mHealth interventions are “low cost and easy to do, so it can’t hurt to do more of it”. However, both of these statements, in my view, cannot be shown to be true without more evaluation work.

Right now there is an explosion of interest in using mobile phones to deliver health information and health services around the world in both low and high-income settings. mHealth platforms are being used to deliver everything from basic health information to patient level reminders that can be considered health services. On the supply side, health care providers are being taught how to use mobile phones to diagnose patients, to triage and expand health services, and to even treat patients. This is great since there needs to be continuous innovation in health care delivery.

But mHealth is not just changing the way in which existing health interventions are delivered but is really creating new health services, which can lead to very different outcomes. It is for this reason that these new strategies must be evaluated – even if the services that are being delivered have been shown to be effective in other ways.

Most of the evidence on the effectiveness of mHealth interventions has been small scale, case studies, and for the most part lacking rigorous strategies to identify effects or health impacts. Many studies focus exclusively on whether or not the programs were successfully implemented. And while the few rigorous evaluations that have been done (or at least I should say have been done and have been published) have generally found small but significant intended effects from the approaches I think we still have a lot to learn about the benefits and potential consequences of mHealth approaches.

Which is why the results of a new working paper released by Julian Jamison, Dean Karlan, and Pia Raffler should give many in the mHealth field a bit of pause or at least make you go hmmm. The authors of this paper were involved in a randomized evaluation of a mHealth project in Uganda that was aimed to provide users more information about the riskiness of various sexual activities in order to reduce overall risky sexual behavior. Treatment villages received encouragement to advertise the program and to encourage its use while in the control villages they were also able to use the program but were not exposed to this treatment. Data on many indicators, including sexual behavior, was collected in both treatment and control villages at baseline and endline.

You can read more about the program itself and the overall findings of this evaluation in this new policy brief from IPA but I want to highlight two important findings:

1. The authors found that the program was implemented as intended: in treatment villages people were making use of the program and were accessing the health information more or less as intended. Great! This is typically the type of results that are presented in many types of evaluation studies I have seen.

2. However, the program did not change sexual behavior as intended and worse may have even led to more risky promiscuous behavior! Ooops!

What should we make of this? As a starter, I think it does mean that many of the arguments I have heard recently are not necessarily true – we don’t know that this works and there might be unintended effects of these efforts that still need to be better understood and explored. I am a believer that mHealth can revolutionize health care delivery in low income settings in a good way but I don’t think we are there yet in terms of really knowing what works and that there is an ongoing need for more evaluation – and more rigorous and more insightful evaluation in this field. We are experimenting with people’s lives and people’s health every day in global health, at least lets try to learn more from these experiences.

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Zoe McLaren from the University of Michigan sent me a link last night to this fascinating article that describes the custom of giving new mothers in Finland boxes that contains an incredible set of goodies that most newborns need in early life. Once the clothes, diapers, and other items are removed, the box can then be used as a bassinet. Doctors encourage the use of bassinets as safe sleeping spots for infants, rather in their parents’ beds.

Contents of the Finnish Maternity Box as shown on the the BBC Website.

The custom is over 75 years old and was started as a way to encourage Finnish women to deliver in health facilities and to get seek early antenatal care services (an uncommon practice back then, as it was in most of the world), in particular among low income women. The article claims that the box may help explain why Finland has one of the lowest infant mortality rates in the world.

“Maybe there is are some lessons for Africa?”, she asked. Well actually, it turns out I have been thinking a lot about this, and how this might actually fit into reducing maternal and newborn mortality in low income settings.

I am back in Uganda this week wrapping up some interviews for the external evaluation of Saving Mothers, Giving Life that I have been working on over the past year with a great team of researchers up at Columbia SPH. In both Zambia and Uganda one of the interventions that was implemented, as part of the scale-up of SMGL, was the use of “Mama Kits”, small packages that included important medical supplies and other materials needed for a safe delivery.

The use of Mama Kits themselves is not a particularly new innovation in Uganda, as they have been around for a while and have been deemed successful here. What was more innovative, some kits also included other items, including well-made receiving blanket. Apparently, the blankets were a huge hit among Ugandan women.

So much so that when I was here in November, I heard stories (I can’t say if they are true or not) of women going to one facility to deliver, finding out that the kits that were being provided at that facility did not contain the popular blanket, leaving, and moving onto to the next facility. Although, it is difficult to attribute any increases in the SMGL focus districts to any one intervention, I kept asking, how much did these kits contribute to the gains in institutional deliveries?

Earlier today I was talking to one of the researchers on our team who told me about some related research she had done in the past where in focus groups of women with non-institutional deliveries would report fear of delivering facilities because they did not have any clean clothes for the baby to go home with and were ashamed.

A quick search of Google scholar turned out no obvious literature on this topic, but I am by no means and expert on this. It seems almost silly to think that this might be a deciding factor in the decision to either (1) deliver your baby in a place that has potentially life saving health services or (2) at home where if something goes wrong you can die very quickly. But the story from Finland and my own observations here in Uganda seems to suggest that they might. Perhaps we can all learn an important lesson from those crazy Finns. Anyone want to fund a crazy impact evaluation study?

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I am currently in Kuala Lumpur where I have been fortunate enough to be one of the delegates attending the inspiring, and at times overwhelming, Women Deliver 2013 conference. Although this is much more of an advocacy conference than a research conference (in fact yesterday someone explained that it was not a conference, but rather a movement) I’ve really enjoyed the opportunity to learn more about what is going on outside of the ivory towers in the maternal, women’s and reproductive health worlds. It has been a great place for thinking up new research questions and trying to understand where my work might fit into this space. Plus, it is one of the only places I have been where I, a lowly academic, have had the chance to mingle with Princesses – real ones.

The main reason I am here, however, was to present the findings from a new report that I co-authored with Jeni Klugman, the Director of Gender and Development, at the World Bank. In it, we attempted to summarize the evidence on what is know about the economics maternal health in developing countries. It is a thin literature, a bit surprising given how important this issue is, but we believe that we have found enough evidence to support the case that addressing maternal health is a missed opportunity for development, and proven approaches to address this issue. We have also made this point a few weeks back in a commentary in the Lancet.

It has been amazing to be here and to be among so many people (I heard there were 5000 delegates) who are so passionate about improving the lives of billions of women around the world. On my way here I met a young woman from Chicago who had only read about the conference a week ago and like that, decided to hop on a plane to be here. It feels a lot like what the AIDS movement was like in the early 2000s. I am curious if, and how, the energy that here this week can be channeled and sustained in the years to come.

Why Malaysia? Well, Malaysia has been one of the developing countries with the most successful track records at reducing maternal mortality. Plus, given that innovation seems to be the big buzz word here – what new approaches and new ideas can be implemented to address the needs of women – Kuala Lumpur has been a perfect backdrop for such a conversations with its frenetic shopping malls, skyscrapers, and exciting urban spaces.

My only complaint is what appears to be a complete lack of emphasis on research and evidence. I am one of the few academics here. I asked almost everyone I met this week the same question: how often do you read research and to what extent do you use this to inform your work? Almost uniformly the answer has been – not at all. Yesterday I attended a panel where every panelist presented an overview of their work where they were trying out nearly identical “new approaches”. Sadly, this conference has also convinced me that there is too little research underway to test the many innovative approaches underway around the world. Perhaps that is the real missed opportunity for maternal health.

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In today’s world of “Big Data”, it seems hard to believe that less than one third of all births and over two thirds of all deaths are still not recorded around the world. For all intents and purposes, births and deaths that are not recorded don’t count – and that is a big problem. In the words of Nandini Oomman and co-authors put it so eloquently in a recent commentary in the Lancet:

Functioning vital registration systems are global public goods that help with the collection, storage, retrieval, and analysis of accurate population and demographic data to support development policy and monitor health outcomes, particularly for maternal and child health. However, without strong vital registries, individuals do not have legal documentation of their own personhood, citizenship, and all associated rights; national policy makers do not have necessary data for resource allocation and planning; and the international community does not have evidence to monitor development progress against global benchmarks—eg, the Millennium Development Goals.

For far too long the excuse has been a lack of resources, but I really don’t buy this argument. Chris Murray once told me that India had a functioning vital registration system in place up until the 1920s when it was neglected and became non-functional. It seems that collecting data on people, even vitally important data, has been neglected and ignored by national and international policy makers. This study of maternal mortality declines in Sri Lanka – one of my favorite papers, ever – documented cause of deaths in the late 1940s, which was only possible due to the excellent data systems that were in place in that country nearly a century ago.

Last week a big conference on civil registration and vital statistics (CRVS) systems was held in Bangkok. It appears that momentum is building to put such systems into place around the world. But concerted efforts will be needed to be put into place to make this a reality. Donors have a big role to play. As consumers of global health data, it is not unreasonable that they should also be expected to pay for a big part of it, but not in one-off data collection systems as they do now. CGD’s proposal to build data into its cash-on-delivery scheme seems like a good way to go – but there are other good ideas out there. The power of mobile phone technology is also making it easier, more effective, and cheaper to collect data from many locations and this should be further enforced in the context of vital registration systems.

Vital registration systems are vitally important to global health. It is about time that they get the attention they deserve.

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