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Interview with Michele Connolly1

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Michele Connolly holds an M.P.H. from the University of California, Berkeley and was a statistical researcher at a variety of United States federal agencies, including the National Center for Health Statistics (NCHS), the Department of Health and Human Services (DHHS) and assignments in and for the U.S. White House, as well as at the state level (California Urban Indian Health Clinics). She is an enrolled member of the Blackfeet Nation in northern Montana. Her research work has focused on measurement and survey data collection, along with impacts on specific populations, primarily Native American/Indigenous population in the United States. She served on First Lady Hillary Clinton’s Health Care Reform initiative. Her tribal membership and personal experiences of living on the Reservation have given her insight that she has used throughout her career. These experiences have also given her many opportunities to bring focus on Indigenous2 populations, while remaining true to the mission of the agencies that have employed her in the areas of disability, health and poverty.

Michele Connolly is serving as the Special Editor for this issue of the Statistical Journal of IAOS – “Measuring Indigenous Identification”. This interview took place in person between Michele and Katherine Condon. We were joined by Kirsten West (KW), General Editor of SJIAOS. We sat outside on the deck of the Whole Foods in Columbia, MD on August 3, 2018.

INTERVIEWER: Thank you so much for allowing us to interview you. Let us start at the very beginning and go back to your childhood. Where did you grow up and what was it like?

I grew up in a variety of places, mostly in the West. My parents were meteorologists and my father was transferred from place to place. We spent a lot of time on the Blackfeet reservation in northern Montana, which is contiguous with the Canadian border and Glacier National Park.3 We went back and forth to the Reservation in Montana. I was born in California. I also spent some time in Las Vegas, at a time when very few people lived there. My parents forecasted weather (including hurricanes) at the end of the Mississippi River in Louisiana. We also spent time in Brownsville, Texas and different places in the West.

We lived in different places on the Reservation, too, including Browning, Montana,4 which has a population of 1,041 people. My grandmother and I lived outside of Babb [Montana],5 when it had a population of 25 people. We got our mail at the general store, but now Babb has a separate post office building. When I lived there, the mail came only twice a week – Tuesdays and Saturdays.

When I was working on the Health Care Reform, President Clinton had a number of work groups and wanted to form one on “rural health.” People were volunteered from different work groups. I was on the long-term care and disabilities work group. Since I was the only member to have ever lived in a rural place, I was assigned to the Rural Health work group. During the first meeting of this work group, I met many people from farming communities in the Midwest. When they asked me where I was from, a woman said “You aren’t rural, you are frontier.” [Laughter]

INTERVIEWER: With all that moving about, what was your education like before university?

Despite moving around in elementary school, my father was very adamant that we all – I have three brothers and two cousins who were raised with us – that we all take as much math and science as we possibly could and we get A’s in these subjects. Then, in his words, he didn’t care what other subjects we took or how we did.

We attended high school in Las Vegas [Nevada], which had outstanding teachers, many of whom had been college professors in California. During that time, many of these teachers were paid more than they had in California. My math teacher was a woman who had taught aeronautical engineering at Stanford [University]. I was lucky to have the high school education that I did. I took calculus in high school (a rarity at the time), and as much science as I could. My biology teacher in high school had been the top science teacher in the country a few years before I took his class. We learned how to code in my sophomore year, back in the day when there was only Fortran and Cobol using punch cards.

My oldest brother is a retired electrical engineer; another of my brothers is a professor of computer science at the College of Southern Nevada; another brother became a high level administrator in the school district.

INTERVIEWER: Looking back to our childhoods, we often find that a particular event or person had an impact on our later years. Did a particular person or event shape you into the person you are today – or was it the moving about?

We didn’t really think of it as “moving” because we were always together as a family – with our nuclear family and then with at least one of my Dad’s sisters, and his mother – my grandmother – two of my cousins and various other relatives from the Reservation. We moved around together back and forth between dad’s assignments and Montana.

I would say that my father and his mother – my grandmother – were big influences in my life. They were very encouraging.

INTERVIEWER: Let me break in here and ask an unscripted question – what tribe is your family from?

I am an enrolled member of the Blackfeet Nation6 of Montana and am also of Cree descent. We are Plains Indians and hunted buffalo. We are also a border tribe. The Blackfoot Confederacy consists of four bands, with the Blackfoot, Blood and Northern Pikuni in Alberta, Canada and the Blackfeet (also known as Pikuni) in Montana. The U.S.-Canadian border, which we call the medicine line, divides our lands. Reservations in Canada are referred to as Reserves.

[There was a bit of a discussion here about my (KC) family experience and that there is a scholarship at Johns Hopkins University with my uncle’s name which is intended to help Native American students studying computer science/physics. This led the conversation to continue as follows.]

I just returned from Montana. While I was there, my cousin and I talked about how we really like to figure out how things work and how they made. Our grandfather was the first auto mechanic in Montana. We were encouraged to fix and build thing growing up. It made no difference that we were girls. We both sew and make quilts and fix things around the house. My cousin built her deck and house. One time, my Dad brought home a giant box of pocket watches. He had us take them apart and put them back together again.

[We chuckled and I commented on the interesting things our parents do to us. I recalled that my father brought me an abacus after a trip he made when I was 6 years old. Michele responded – as if she herself had received the abacus as a gift – “What do I do with this?” We all laughed.]

In high school, I wanted to be a musician. I played clarinet. In Las Vegas there are a lot of symphony musicians who play on The Las Vegas Strip. They had a little orchestra that met every Saturday morning and I would play with them, when I was fifteen or sixteen years old. They were really fine musicians from around the world and I learned a lot. I was offered music scholarships, but Dad said “No, I want you to go work on your math so you can fall back on it.”

INTERVIEWER: Your CV states that you have a B.S. in Physics from University of San Francisco (USF) and an M.P.H. in Biostatistics from University of California Berkeley (Cal). As the daughter of a physicist myself, what interested you in choosing physics as your undergraduate major?

I wanted to be a meteorologist like my parents and physics is a good undergraduate degree for that.

[A bit of a divergence in the conversation about the historical connection of the fields of physics and meteorology. In the 1920s and 1930s, physics and meteorology were not separate departments/fields of study. Michele noted that even today, there are only a few specific meteorology departments at universities in the United States.]

INTERVIEWER: You didn’t stay in physics, but changed your educational training path to biostatistics. How did that come about? Was there a particular individual/professor that inspired you to make this change?

When I graduated from University, the aerospace crunch had just happened and I couldn’t get a job. Instead, I got married and had two children (I now have three). Then, a friend of mine [who was Navajo] was looking into graduate school and discovered the Public Health Fellowships at U[niversity] C[alifornia] Berkeley (Cal or Berkeley) for American Indians and Alaska Natives. He went into hospital administration. I went into Biostatistics because it is so mathematical.

When I was studying physics in University, quantum mechanics was being studied more thoroughly. There were passionate arguments about sub-atomic particles that couldn’t be seen, had no electrical charge, no magnetic charge, and no spin. It became like philosophy. We had intense conversations, with one professor having one view, while another professor had another view. It has calmed down a lot since those early days, but so many basic questions about the universe are unresolved.

Besides math, I teach physics and AP physics now.7 My students say “Now I see how the world works.” In University, I learned that if you can learn to solve problems well enough to earn a degree in physics, you can apply those skills to just about anything. In fact, one of my statistics professors at Cal, had also started out as a physicist. So, there were many of us in physics who went off into other areas – usually mathematical.

[KW comment – ‘today with the field of biostatistics, I hear a young person today say “I’m a biostatistician” and I think “of course this makes sense but when you were going into this field, that wasn’t the case – then it was unclear.’ Michele agreed and continued with,]

Biostatistics has a heavy mathematical component (statistics and discrete math) and a biological component (science). At UC Berkeley, the biostatistics department in the school of Public Health, has since merged with epidemiology. When I was there, we took epidemiology, which I loved, along with many classes at the Statistics Department at Berkeley. The biostatistics students had offices in the Statistics Department building. Every Saturday at noon, Jerzy Neyman, would call all the statistics students together and serve us tea and cake. He was encouraging and warm to us all.

[KW commented, that she too had taken some biostatistics classes while doing her degree in Demography at North Carolina. She thought it was a bit intimidating as there was a very different approach than Demography. The Biostatistics program was just on the edge of computer programs and packages were still emerging. SAS was not around, so she (and fellow students) had to program everything in Fortran. This comment reminded Michele of an assignment she had at the time.]

Now, statistics students have calculators and better technology. Then, we used slide rules and the big mainframe computer. which we had to program ourselves for our assignments. Programming can be onerous, especially for regression, with its matrices. We complained about the programming to our Regression teacher – Brillinger, when he assigned a problem with something daunting like manipulating a 7 × 7 matrix. We asked him not to make us program the calculations, so he told us we couldn’t use the mainframe, but would have to do all the calculations by hand. We were given the assignment on Friday morning and had one week to complete it. During that time, we spent almost every waking minute checking and rechecking endless pages of calculations. We finished the assignment a couple hours just before class started the following week. [Laughter.] We never whined again about programming.

INTERVIEWER: Turning back to our set of questions, remembering back when you were completing your education, what did you hope to accomplish or what were your professional aspirations?

At Berkeley, I was in a group of American Indian and Alaska Native students. We had fellowships from the Indian Health Service. We all wanted to help our people. In Biostatistics, I realized that you can tell stories with numbers. American Indians are storytellers and that’s what I wanted to do –tell stories with numbers and have the stories be used to help our people. We could have research done “by us” not “for us” or “to us”.

At the California Urban Indian Health Clinics, I started out as an intern, analyzing patient summary forms and surveys from their seven or so clinics. I analyzed the data and used the results to evaluate the program and obtain funding to keep the clinics open and offer more services. I realized that statistics have the power to improve people’ lives. And it fit all together: the mathematical and statistical techniques to analyze data and real-world applications. Together, those elements tell the story.

[Michele identified this as one of her greatest satisfactions during this time period, as she was able to show with evidence how evaluation and funding was being used in the right way to meet service goals.]

INTERVIEWER: What tribe or tribes are resident in California?

There are many tribes in California, including the Wailaki, Yurok and Chumash, from Reservations/Rancherias.8 California is the most populous state and the one with the most American Indians, many from outside California. Urban clinics served American Indians from many tribes across the country. Like all Americans, there are different reasons why American Indians moved to California. However, one reason was the relocation program of the 1950s and 1960s, which relocated people from reservations and sent them to cities to learn a skill. My grandmother went to Phoenix for relocation. Women tended to be trained as practical nurses, while men tended to be trained as welders. There were also large relocation programs in Los Angeles and San Francisco. Some people remained in urban areas, including those in California.

INTERVIEWER: Earlier, you said “many surveys” – was there one survey in particular that you enjoyed?

I was thinking about this earlier, and probably one of the most enjoyable things that I did – in many different guises – was to look at data and examine how results would change if the definition of something basic like disability or family was changed. I began by analyzing health insurance and poverty, but was assigned to disability during my time at the Office of the Secretary in Health and Human Services. Disability was a particularly hard thing to define. The United States, at that time, was the only major country that did not have a survey on disability. I was in charge of analyzing disability, but we had little data. I tried to do what I could, but people would say – well, it’s impossible to measure, and because we can’t measure, we can’t analyze it, and because we can’t analyze it, we can’t do this and we can’t do that. In other words, we couldn’t do anything, because it was too hard. But my argument was , it is hard to measure, but…it is also too important to ignore. We have to try.

Perhaps, my biggest accomplishment – and I worked on a lot of surveys and decennials – was developing and implementing the National Health Interview Survey (NHIS)9 Supplement on Disability or NHIS-D. We spent 2 years conceptualizing and testing the best ways to ask questions and measure disability through pretests and cognitive questionnaire labs. I headed a large group of interested parties, including government agencies interested in disability, advocates and the National Committee on Vital and Health Statistics and an interagency working group consisting of about 40 or 50 people from different government agencies, as there is no one governmental agency on disabilities. We had representatives from Social Security, Department of Transportation, OMB,10 HHS,11 and the Department of Education. We worked with the National Center for Health Statistics (NCHS) and used their cognitive questionnaire lab and pre-test capabilities.

Two subpopulations of those with disabilities were especially hard to measure – those with mental or emotional impairments and children. Although measures of mental/emotional impairments existed, a former President of the American Psychiatric Association told us that these measures would be misleading outside clinical settings in the context of a household survey. He became our principal advisor on these questions. Since mental/emotional impairments often have a stigma attached in a survey setting, we developed questions which included several factors: a diagnosis check list (e.g. schizophrenia, bipolar), limitations in functions (e.g. difficulties or inability to concentrate, use of psychotropic medications and admission to a mental hospital. This was done, because some respondents would reply to a condition only or a limitation only (inability to concentrate) or a medication only. We developed an algorithm to account for these different approaches.

We were able to use an existing grant to the American Academy of Pediatrics to derive and measure disability in children. At their recommendation, we had separate measures of disability for teenagers, school-age children, and infants and toddlers.

After two years of development, we decided to do two interviews: the first interview, which was a supplement to the National Health Interview Survey, and a follow-up interview for people who identified as having a disability. The second interview focused on specific aspects of disability. We also had linkages to Medicare and Social Security files.

I was in charge of fundraising. All of our agencies in the Interagency committee contributed, as did the Robert Wood Johnson Foundation, which provided a million dollars. The total cost was slightly less than $15 million, and we ended up underbudget. We came up with not one, but many different measures of disability, which could be used for different policy purposes. When the NHIS-D began, we thought we could up with one way to measure disability. That was a naïve approach to a complex concept. For example, the Black Lung program for coal miners with Black Lung disease has a narrow definition of disability (having Black Lung disease), while Social Security disability has a programmatic definition relating to having a disability too severe to work. The VA12 also has their own definition of disability. The Department of Transportation tends to be interested in mobility issues – like how many special buses did they need. So, there are a broad array of definitions, but the NHIS-D provided data to analyze these varying definitions and programs.

The NHIS-D took five years for development and implantation. It was not only a survey and analyses about people with disabilities, but an example of the power of definition. I published a paper with the American Statistical Association on these different definitions of disability and how prevalence and characteristics vary depending on which definition is used.

We never used the word “disability” until the very last question, which was based on legal language in the Americans with Disabilities Act (ADA13). This question was “Do you consider yourself to have a disability?” Yes/No/I don’t know. “Do others consider you to have a disability?” Yes/No/I don’t know.

Some respondents who reported impairments did not consider themselves as having a disability. These included people who may have had a hearing impairment, or were in a wheelchair, but who were working and didn’t consider themselves to have a disability. While these people may not be eligible for a disability program, they may have needed their local governments to provide cutaways in sidewalks, required by the ADA. There were others who did not report any impairments or limitations, but may have had severe burns, and reported that other people perceived them as having a disability.

[We discussed this issue of what does it mean to be “in a wheel chair” – while the individual using the wheel chair may not think of themselves as “disabled” or limited in what they can do, others assume that they are disabled and limited – and may attach a label or stigma to being wheel chair bound in popular culture.]

INTERVIEWER: You then transitioned from the State of California to the United States Federal Government, first at the National Center for Health Statistics as a Statistician, and then to various other U.S. federal agencies, i.e., Centers for Medicare and Medicaid, the Social Security Administration and Department of Health and Human Services. With regard to all of your federal positions, and your federal career as a whole. How did each come about?

[First, transitioning from the State of California to the Federal government], I got a job offer from the federal government’s National Center for Health Statistics (NCHS). At first, I didn’t want to move out all the way here [Washington, DC] from the west. My grandmother even sent me food from the Reservation, because she wasn’t sure we had grocery stores. [Laughter!]14 I didn’t know anybody [who had ever been out to eastern United States]. However, my mentor at Berkeley, said that I could learn skills at the National Center for Health Statistics that I really couldn’t learn anywhere else, because NCHS had the Health Interview Survey, the oldest continuous health interview survey in the world. Furthermore, their sampling expertise at NCHS was world-renowned. My advisor said, that I would learn the skills at NCHS that would help me and my people.

INTERVIEWER: Is there any one project throughout your career that you feel you will be able to look back on and say that it was your favorite project?

The NHIS-D disability survey.

INTERVIEWER: Is there anything else during your federal career that we haven’t talked about, that you would like to add?

Let’s see, my 20 years at the Department of Health and Human Services (DHHS), was probably the most fun. I worked in the Office of the Secretary, specifically the Assistant Secretary for Planning and Evaluation. I started as the resident Statistician, but then was assigned to policy analyses in Aging and Retirement during Ronald Reagan’s administration Social Security Reform. After that, I was assigned to Long-term Care and Disability. I was also assigned to perform work for the White House a few times for health care reform, welfare reform and child support legislation. I did a little epidemiological study/paper for the Reagan White House on HIV/AIDS on the effect it would have on federal programs, then and 30 years in the future, including impacts on the Social Security and Medicare Trust Funds. One time I was lent out to Vista and another time I helped write a report on urban clinics funded by the Indian Health Service. It was all very exciting.

It was fun to do policy analysis and being involved in a small way in policy development. I worked for many political appointees of both parties. I learned that policy papers had to have the conclusion in the very first sentence. It would be similar to a murder mystery, where the author tells you who did it in the first sentence, and the rest of the book would be about what happened. The other point is that you couldn’t bring up a problem, unless you had a solution. Policymakers, when faced with an issue, want to know what they can do.

I had many assignments in DHHS and also worked with other departments and the Census. Most of my work was on health and disability measures. One of my favorite analyses was based on a sentence out of a Census Bureau report that said that women on welfare, that is, the Temporary Assistance for Needy Families (known then as AFDC or Aid to Families with Dependent Children) were more likely to report a disability than other women the same age. I thought that was strange and wondered why they were not on disability programs. My analysis reconfirmed this result and indicated other factors, such as that children of mothers on welfare were also more likely to have a disability compared to other children. The results were used in developing welfare reform, where there are different work requirements if a woman has a disability herself or cares for a child with a disability.

INTERVIEWER: Fascinating. Moving on – after you left the federal government after over 30 years of service in October 2007 and have transitioned to being a Home Hospital Teacher in your county public school system. You teach High School Math and Science. How did that come about? What was the impetus for that? Could you tell us a little more about what this position entails?

When I first retired, I wanted to figure out what to do with the rest of my life. I had retired friends who would go out to lunch and get their nails done and I didn’t have any interest in that. [Laughter] That kind of retirement didn’t work for me. I saw a job advertisement online for Home Hospital teaching, which stated that math and science teachers were needed. I’m not a certified teacher, but I could teach math and science. I started out with a few students and ended up with many more. During my government career, I helped populations of people, but never got to meet them. However, in my teaching job, I see and interact with students. I get to help them graduate from high school even though their lives have been interrupted by illnesses or other adverse events. They graduate on time and get on with their lives, often going to University and graduate school.

INTERVIEWER: That alone is interesting. Before we move on to the next prepared question, I wanted to go back to your federal career, and ask how you were able to have this focus on American Indian health issues at NCHS with its more general health focus. How did you balance the general versus the more specific focus on Native American health issues in your career?

In addition to my regular duties analyzing policy and programs for the entire American population, I was never shy about speaking up about how policies and programs might affect American Indians. For example, when I was at NCHS, Indian reservations were not included in civilian sampling units, but were included/counted along with military reservations. This meant that [Native Americans] were not sampled, so couldn’t be in surveyed like in the National Health Interview Survey. I brought this up again and again and it changed.

Whenever I had a chance, I would ask questions on how Native Americans were impacted by general practice of measurement. In addition, I belonged to and was active in the American Public Health Association and a group focused on American Indian health issues. I wrote papers – often in my spare time.

INTERVIEWER: So, it was a matter of balance within what one has to do for the job and one’s personal interest?

After retiring, Fritz15 got me involved in an international group called the International Group for Indigenous Health Measurement (IGIHM), sponsored by CDC and chaired by Sam Notzon of NCHS. Fritz invited me to an IGIHM meeting in Montreal five years ago and I was named Indigenous co-chair, [uring this meeting. Sam Notzon and I have been co-chairs together for a few years. IGIHM consists of Indigenous and non-Indigenous members from Australia, New Zealand, Canada and the US. The IGIHM holds monthly conference calls and in-person meetings every other year or so. We also have subgroups, including the identification subgroup which I chair. The identification subgroup is featured in this special edition.

INTERVIEWER: Yes, it all comes full-circle now…

Yes. Indigenous data and analysis goes back to “By us”, not “For us” or “To us”.

The foundation of Indigenous data is how identity and identification are defined. This was a central finding from a paper in the Lancet, where the lead author was Ian Anderson, University of Melbourne, currently working for the Prime Minister of Australia. I wrote the section on the US and was part of a statistical review team.

The Lancet paper16 was a groundbreaking study, in which comparisons between Indigenous and the general populations from 23 countries were made on a variety of health and socio-demographic indicators. These indicators included a variety of measures – such as infant mortality, maternal mortality, life expectancy, nutrition and poverty or education. We found that the identification of Indigenous people varied by country, with some countries using self-reported measures, like those which appear on the United States Census. Other [countries] use registries, while others base Indigeneity on if a person speaks an Indigenous language or lives in an Indigenous area. Some countries do not distinguish Indigenous people at all.

INTERVIEWER: I guess this is good way to move to the next prepared question regarding your involvement with the IAOS, and your current service as the Special Editor of this issue with the theme “Measuring Indigenous Identification”. Can you tell the readers, how did you initially become involved with IAOS?

Kirsten West recruited me for this special edition. Fritz told me it would be tremendous. [Laughter.] He has a knack for pulling in people and asked me to be the Indigenous Editor for IAOS. Fritz sees skills in each of us and finds a way to use those skills that will be important to the profession.

INTERVIEWER: How do you see IAOS can have an impact on official statistics for Indigenous populations?

This special edition is going to be incredible for Indigenous people worldwide. Five countries are featured (Australia, Brazil, Canada, New Zealand and the US) along with other papers on Indigenous identification and health. Many of the authors are Indigenous. It is our hope that the special edition will be distributed throughout the world and in the US, to tribal college and universities, along with academic and political organizations. It is an honor for the JIAOS to include a special edition on Indigenous issues.

[In addition, there is an IAOS session on Indigenous measurement – biennial conference in Paris September 2018. This should, hopefully give another push for people to present their work.]17

INTERVIEWER: To wrap up this interview, I’d like to conclude this interview with a little background on how you developed the special theme for this issue.

The theme is “Measuring Indigenous Identification”. Indigenous people tend to be a small part of the population in their respective countries. In the United States, the Indigenous population makes up about 1.6 percent. We are often invisible within the larger population of our countries, both in society and statistically. Data are limited, due to small samples, geographical isolation and a host of other factors. Even in a country like the US, which has one of the best statistical systems in the world, there is little data on American Indians and Alaska Natives. This special edition of the journal is a way of highlighting that we as Indigenous people are still here and that we have an important story to tell.

I have to thank you ladies for making this happen.

INTERVIEWER: Thank you so much for speaking with us. Best of wishes for your session at IAOS conference in Paris and I look forward to reading the articles in this special edition on Indigenous population health measures.

Notes

2 In the United States, the term “Indigenous people” refer to American Indians and Alaska Natives, sometimes referred to as Native American. In addition, individuals often refer to themselves by their tribe. Native Hawaiians and Other Pacific Islanders (e.g. Guam) are also Indigenous Americans.

4 Browning is a town in Glacier County, Montana. It is the headquarters for the Blackfeet Indian Reservation and the only incorporated town on the Reservation. The town was named in 1885 for Commissioner of Indian Affairs D. M. Browning. For more information, see: https://en.wikipedia.org/wiki/Browning,_Montana.

5 Babb is a small unincorporated farming and ranching community in Glacier County, Montana, United States, on the Blackfeet Indian Reservation. The community experiences a large influx of tourist in the summer months as it is the gateway to the Many Glacier area of Glacier National Park For more information, see https://en.wikipedia.org/wiki/Babb,_Montana.

6 For more information, see http://blackfeetnation.com/.

7 Michele will talk more about this later in the interview.

10 Office of Management & Budget.

11 U.S. Department of Health & Human Services.

12 Veterans Administration

13 American Disability Act – for more information see: https:// www.ada.gov/.

14 As a native Californian myself, I understood some of these issues – although my parents had family and lived some of their childhood years on the east coast of the United States. My father told me that what he didn’t like about the east coast was that he couldn’t see the horizon. Michele brought up the issue of GPS directions on her phone – identifying “keep going North” and yet, when one can not see the horizon – it is difficult to know which direction is “North”.

15 Fritz Scheuren, former General Editor of SJIAOS.

16 Anderson, I, Robson B, Connolly M, Al-Yaman F, et al., “Indigenous and tribal peoples’ health” (the Lancet-Lowitja Institute Global Collaboration), Lancet, London, England. 2016: 388(10040):131–57.

17 The program for this conference is located at http://www.oecd. org/iaos2018/programme/.