Part 1: Early life and Training
Dr. Holl, M.D., Mary Harris Thompson Professor, Professor of Pediatric and Preventive Medicine and Director, Center for Healthcare Studies and Center for Education in Health Sciences, Institute for Public Health and Medicine (IPHAM). ( follow up part 2 here)
We recently sat with Dr. Holl for an in-depth and extensive discussion about her career trajectory, her research in patient safety, and future directions.
Can you tell us a bit about yourself and your background?
Dr. J.H: So, I’m Jane Holl, a pediatrician by training. I went to a Fench lycee for high school. My parents just said study whatever you want with little or no discussion about one’s choice of study for college or future career. I didn’t think I was strong enough in any of the pure sciences to succeed.
There were no physicians in my family. I went to medical school because I liked science.
When I was in medical school, I did a lot of clinical rotations outside of Belgium. There was a shortage of clinical rotation opportunities in Belgium and since my parents were living in Great Britain, I did many rotations in Great Britain. I also spoke French, so I went to France on several occasions to do clinical rotations. I also came to the US for at least one rotation every year.
I was exposed to the Belgian, French, British and US healthcare systems. My interest in the delivery of healthcare in the United States emanated mostly from my personal experience. I grew up in Europe. By the time that I was 20 years old, I had lived in five different European countries.
Even in that period, which was many years ago, they already had universal healthcare systems in most European nations.
Tell us about your early training
Dr. J.H: I trained that the Université Libre de Bruxelles, which means the “free” university, meaning a non-religious institution free mason university. When you have a universal healthcare system, no one is ever turned away because of insurance coverage or ability to pay. During my pediatric training here in the United States I, of course, became exceedingly aware of the disparities in both access and quality of care in the United States.
For the first 15 years of my career I practiced as a general pediatrician in Newark, New Jersey, which was a very inner-city community. I worked at nights and I was the only pediatrician in the emergency department at an urban Newark hospital.
Then, when my husband was recruited to University of Rochester, I had an opportunity to go to the University of Rochester with him and complete a fellowship in health services research, that was funded by the Bureau of Maternal and Child Health, and to be completely honest, I started down the path of building an academic career. Even back in the 1980s, which was when I was practicing, particularly, in a city like Newark, it was the height of aids epidemic, violence was a huge issue, there was a lot of injury related to violence, overdoses, and child abuse.
I was incredibly aware of the lack of universal healthcare coverage and the issues around access of quality of care for minority low-income populations. So, when I went to the University of Rochester, I took advantage of the fact that they had a fellowship. There were two faculty members, Robert Hoekelman and Robert Haggerty, who were essentially the grandfathers of health services research in pediatrics. They had done some of the earliest work looking at how the delivery of healthcare to children could affect health outcomes.
How did you choose this career path?
Dr. J.H: I began by focusing on the lack of health insurance in the greater Rochester, NY area. When I suggested that I wanted to assess the insurance coverage of children in the area, my colleagues and other faculty members were skeptical. They felt that it [insurance coverage] wasn’t really a problem. They said things like “we have a very low uninsured rate among children”. So, I did a survey of children in the Rochester area and a few of the surrounding rural counties. Schools had a school health form that needed to be completed on entry into different grades, so I attached another question to the survey and asked parents to answer whether or not the child had health insurance and, if yes, what was the type of health insurance. Lo and behold, I found that the uninsured rate was close to 7 – 8% among children in this area.
At that time, uninsured rates for adults in the United States was as high as 13 – 14%. For children, because of the public programs, the uninsured rate has traditionally been much lower. People always think of immigrant or undocumented children as being uninsured, but in reality I saw many children of the working poor who were uninsured. I did a lot of work in the next few years and published one of my very first papers in the American Journal of Public Health, which described the uninsured rate of children in the United States. I talked about the concept that many of the uninsured, particularly children, were children of the working force. The parents were working and earning a living, but still did not have healthcare coverage.
What was the significance of your observation and implication that knowledge of health insurance coverage of children was incomplete?
Dr. J.H: I never did any qualitative work to explore this question. But it seemed to me that there was significant misperception about child health insurance coverage. President Clinton was negotiating with Congress for the reform of welfare, known then as Aid to Families with Dependent Children (AFDC), which had been around for more than 30 years. It was a dramatic change when they shifted the program to a workforce development program rather than support for families with dependent children. I was practicing as a general pediatrician at the time. I was reading in the New York Times about this major public policy reform that was going to substantially impact low-income women and children. Then, I would go into clinic and ask my patients’ mothers whether they knew that their welfare, their monthly check, wasn’t going to be coming in the mail any longer. They had no idea.
How did this early work influence your career trajectory and subsequent research work?
Dr. J.H: There was a huge disconnect between the policy changes and the people being affected. This disconnect led me to write some grants to look more closely at how this policy might impact the lives of these low-income families. In particular, these mothers were being required to go to work training programs or work, so how was this going to impact their children?
I knew from my practice that many of the mothers did not work because they, or their children, had a chronic illness such as a mental health condition or substance abuse problems. I became very interested in understanding the impact of these policy shifts on families.
Around that time, I moved here to Northwestern University, and was awarded my first RO to look at the impact of welfare reform on low-income families with young children.
I was also able to take advantage of a large grant from the McArthur Foundation, awarded to the Institute for Policy Research (IPR) on the Evanston (North) campus. Professor Dan Lewis was the principal investigator and the focus of the grant was to understand the impact of the welfare reform legislation on young low-income women’s ability to find and maintain work. We then leveraged this award to get funded by National Institute for Children and Human Development (NICHD) to look at the work outcomes of mothers with young children. Additionally, to look at the health outcomes of both mothers and children. The study produced some very interesting results, although not entirely surprising.
About a third of the mothers were quite successful in getting off of welfare and finding work. We followed them for almost seven years and for those women, their incomes gradually increased. The health of their children was quite good. About a third of the women oscillated back and forth between work and requiring Temporary Assistance for Needy Families (TANF), which was the new name of the program. During the seven years we followed them, many of them or their children had a chronic disease. About a third of the mothers were unsuccessful in coming off welfare during the time that we followed them. These were most commonly women who either had a child or a family member who had a significant disability or they themselves had a significant health condition.
That project ended around the time that the Bush administration began. It became abundantly clear to me that there was going to be relatively little change in health policy of the United States.