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00:00:00 - Beginning of first interview session

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Partial Transcript: MM: Okay, it is Thursday, November 19th, 2020. My name is Maddy McGlone and I am here with Lezli Redmond.

00:00:31 - Early life and growing up

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Partial Transcript: MM: So my first question, I just wanted you to tell me a little bit, just to start, about your earlier life and growing up...

Segment Synopsis: Lezli was always attracted to medical things but squeamish about blood and hospitals. She thought she would become a veterinarian but she wanted to be with people, not animals. She got a degree from UW in Medical Sociology, coming from a suburb in Chicago. She loved the two lakes right in downtown. She got a job at the Mental Health Center of Dane County, now Journey. She stayed there for 4 or 5 years but felt stuck because she didn't have a Master's. Her former spouse got a job in New York so she moved with him, had a child, and worked for Planned Parenthood who paid for her Master's in Public Health. This way she could be involved in research and health without having to be too hands on medically. She worked with a librarian to start an AIDs resource center and brought resources to at risk communities, which helped her get more involved in the research side of things. She wanted to move back to Madison and work at the UW in public health and epidemiology. She was hired by the Department of Psychiatry and worked on a study about women's eating patterns. She didn't have a lot of experience in psychiatry but applied for a job at the Women's Health Initiative and got the job in 1995. She had to set up the clinical center and recruit women. She loved working on start ups and getting things off the ground.

Keywords: Epidemiology; Medical Sociology; Mental Health Center of Dane County; Public Health

00:06:25 - Background of the Women's Health Initiative (WHI)

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Partial Transcript: MM: So you mentioned when we talked before that you wanted to talk a little bit about the background of WHI...

Segment Synopsis: The Women's Health Initiative was a landmark study because it was largest preventative study and the largest study involving women ever done. We were just starting to see women in leadership positions in medicine. The purpose was to redress the inequities in research for women. Most medical knowledge was about men who were in clinical trials. Women had to be involved in trials too. There was an emphasis on involving women all over the country; Lezli's site focused on rural women. They thought women would be nervous about joining a national study, especially black women or women from small towns that didn't trust the universities, however many women stepped forward. The study addressed risk factors for cardiovascular disease, cancer, and osteoporosis. The women recruited were 50-79. There were three clinical trials and a very large observational study. 161,000 women enrolled nationwide. They also tested post menopausal hormone therapy but they found it led to higher risk of cardiovascular issues and breast cancer. Lots of people were buying low fat products that were actually higher in sugar so they tested the impact of a low fat diet vs one high in fruits, grains, and vegetables. They also looked at risks in calcium and Vitamin D supplements for various cancers. They also recruited women for ancillary studies.

Keywords: Clinical Trials; Outreach; Women in Leadership; Women's Health; Women's Health Initiative

00:12:05 - Community response to the WHI

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Partial Transcript: MM: I'm just wondering, you talked about the women and cooking classes and that sort of, more, community...

Segment Synopsis: There was a really good energy surrounding the WHI. They loved their nutritionists. They were able to create loyalty so they could follow people for 5-7 years or longer. They wanted them to feel attached to the study and that it was significant that they were in it. Women drove for hours to get to their visits and classes. They distributed a news letter once a month to keep everyone engaged and they invited women to submit a quilt square that signified to them what it meant to be involved in the WHI. 44 women submitted squares. One woman in the study volunteered to quilt them together. They hung the quilt in the reception area so people would see it as they walked in.

Keywords: Medical Studies; Quilting; WHI

00:14:52 - Her role as Project Director in the WHI

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Partial Transcript: MM: Your title was Project Manager, right?

Segment Synopsis: Lezli was the project director but at every site the Coordinating Center required a data manager, recruitment director, and clinic manager. In the beginning when they had a very small budget they wanted to spend as much money as they could on recruiting women so she had to take on all three roles. She had to go to Seattle for training in each role. She really enjoyed the work but sometimes found it hard to also balance with two young children. She got to participate in different leadership committees. She had a really good site because of the women's participation and they met all of their goals and were noted for their outstanding performance.

Keywords: Data Manager; Project Director; Recruitment; WHI

00:16:57 - Setting up the clinic

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Partial Transcript: MM: So your role as clinic manager, tell me a bit about setting up the clinic and also about recruitment.

Segment Synopsis: They had to have the clinic together before they started recruiting women. The clinic had four exam rooms and a room to do blood draws. Eventually they hired nurse practitioners but first she had to set it up. Luckily the instructions were very clear and she had the budget to set up the clinic. She was not a nurse so she had others take over the management of the clinic. They needed to recruit 3,500 women so they had to reach out to places outside Madison like Oshkosh and Janesville. She met many enthusiastic women during the recruitment process. Three students had to screen 10,000 women to get enough people for the study. They had recruitment meetings and would try to get prominent people in the communities to come. Hundreds of people would come to the recruitment events to hear about the study and would get excited about it once they heard about it. Eventually they started enrolling people at the events themselves.

Keywords: Clinic; Recruitment; Rural Women; Start Up; WHI

00:22:23 - Recruitment and recruitment tactics

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Partial Transcript: MM: So you mentioned all those recruitment tactics, calls, postcards, important speakers.

Segment Synopsis: One of the slogans called the program an "extra pair of eyes watching them" outside of their doctor. They wanted to contribute to better health for their daughters and granddaughters to help the younger generation.

Keywords: Recruitment; WHI; Women's Health

00:23:40 - Comparing other clinics around the country

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Partial Transcript: MM: Do you feel like this was similar to other WHI clinics around the country?

Segment Synopsis: There was also a clinical site in Milwaukee and the two centers collaborated when they could. The Madison clinic was one of the sites with the smallest population. There was more of a community aspect because it was smaller. The Coordinating Center offered instructions that Lezli used to recruit women by telling them how they could contribute. In many other respects, including the collection and submission of data, the center was the same as all the others. The Madison clinic also had a lot of great consulting PIs and an amazing recruitment advisory group. She also had a really good Oral History Advisory group. It was fun to work with all these people.

Keywords: Clinics; Madison; WHI

00:26:56 - Student recruiters

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Partial Transcript: MM: Yeah. I want to get into the oral history in a second, but I did have one follow-up question.

Segment Synopsis: The students involved in recruitment came from all over. The pay was good but the work was hard. They had to keep calling people and doing questionnaires over the phone with them. There was a graduate student who did the oral history interviews.

Keywords: Recruitment; Student Jobs; WHI

00:27:54 - Origins of the oral history project

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Partial Transcript: MM: Well then going into oral histories, you mentioned earlier that you got the idea for it from meeting these Wisconsin women.

Segment Synopsis: Lezli's recruitment person, Susan Dnaeur, would arrange for the meetings offsite. After the meetings, people would come up to them to say she had always been involved in health in their community, even if they didn't have medical training. One helped out in an internment camp when she was young and then made the decision to go to medical school. They told them about their health situations, kids, and what they had done. Lezli and Susan knew they had to capture the stories somehow.

Keywords: Community; Recruitment; Women's Health

00:30:13 - Learning to conduct oral histories

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Partial Transcript: MM: How did you learn about the process of doing oral history and how did you get informed that way?

Segment Synopsis: Lezli was not an expert but she read a lot about it and assembled a group of people-some were oral historians, others had history or medical backgrounds-and came up with the questions they wanted to ask women. The group would review the questions and give feedback. Once the questions were finalized they found a PhD student who wanted to do an oral history project and she conducted all the interviews over the phone. Another person transcribed everything. The original intent was to interview fifty women and videotape ten to create a traveling exhibit. A couple of people were interested in developing it into an exhibit. They ended up doing 17 interviews, none of them videotaped. The interviews were transcribed and she looked for identifying themes. They never analyzed the interviews or did an oral history analysis of the themes. They wanted to recognize and celebrate the women participating at sites around the country for their commitment to the program and its goals.

Keywords: Oral History; Transcription; Women's Health

00:34:55 - Women's attitude towards the oral histories

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Partial Transcript: MM: So you said the women were very enthusiastic about the study.

Segment Synopsis: Lezli's team used stratified samples by age, so they didn't interview everyone who was interested. They wanted to get as many of the older people (in their 80s) to participate as they could. Lezli believes their daughters and relatives should know about the collection so they can listen to their stories and their attitudes about their health.

Keywords: Families; Oral Histories; WHI

00:36:59 - Memorable stories and final thoughts

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Partial Transcript: MM: Were there any particular stories you wanted to share, either stories from women...or about the set-up...?

Segment Synopsis: Lezli would have to check the interviews for specifics. It was a special group of people. The staff used to get together once a year although they haven't met for a couple of years. There were nutritionists, nurses, and nurse practitioners and it was a really unique group. She will review the interviews for the next interview.

Keywords: Oral History Interviews; Women's Health

00:39:05 - End of first interview session 00:39:08 - Beginning of second interview session

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Partial Transcript: MM: It is Friday, December 11, 2020. My name is Maddy McGlone and I'm here with Lezli Redmond.

00:39:30 - Analyzing various trends from interviews

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Partial Transcript: MM: So you mentioned last time that you were interested in gathering up some stories from your history in the program...

Segment Synopsis: Lezli looked through the summaries of the interviews and picked up on some themes. Women were the managers of the health of their families, speaking to doctors and making sure their children went in for checkups, taking care of elderly parents and making sure they had health insurance. Women were clearly taking responsibility in taking care of their family's health. Some participants were eager to take part in the study because they had worked in medical settings (for example with death children) or because of related familial conditions (eg someone's mother had died of breast cancer and the study was about breast cancer). One of the participants had been in a Japanese internment camp when she was very young and the overall health of people in the camp was very poor so it made her want to contribute to health in some way. She was also in an osteoporosis study at the same time. Women with children talked about childbirth. Some had already had personal health issues related to the study but also talked about preventive measures like health, diet, and exercise that they used to keep their health as good as it could be. The interviews and study were conducted before the trends around diet and exercise became very popular. Many women talked about their experience taking care of family members while they aged and their relationships with their healthcare providers. Many participants weren't thrilled with their experiences in childbirth and they didn't like how their providers had acted. One participant talked about how much she appreciated working with female practitioners. One participant was a surgical pediatrics nurse in Germany in WWII and worked in Switzerland post war before moving to Madison. She experienced domestic abuse from her husband even though she was very accomplished. She had had many different health challenges over the years, as did many other participants. One of the questions she asked had to do with changes in health attitudes over the years and one person talked about her experience being a Native American early in the century and the lack of resources on the reservation.

Keywords: Interviews; Trends and Analysis; WWII; Women's Health

00:46:02 - Selecting oral history questions

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Partial Transcript: MM: It sounds like you had a really wide ranging group of experiences...

Segment Synopsis: Lezli didn't have the questions right in front of her but she remembered running the questions by her advisory council which included experts in oral history and conducting oral histories and were also familiar with the study. One of the questions was Why did you join the Women's Health Initiative? Other questions included what projects and efforts had they been involved with that had to do with women's health. Each interview went off on a "tangent" depending on who the person was. For example, the woman who had grown up in an internment camp and later became a physician was asked why she became a physician in addition to the other questions. There were about eight basic questions.

Keywords: Interviews; Oral History; Women's Health; Women's Health Initiative

00:48:12 - Perception of the study and its findings on HRT

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Partial Transcript: MM: I'm also wondering, you mentioned that one of the interviewees had participated in other studies.

Segment Synopsis: Some of the women were involved in other medical research because they were very interested in research and women's health but the majority weren't. All women had to be eligible for the studies they wanted to apply to and talk to their doctor about, for example, going off HRT and being given either HRT or a placebo. Some doctors and doctors were not supportive of the women being in the study or going off HRT. Question: How was Hormone Replacement Therapy perceived at the time and how has that changed? Answer: It was very routine to prescribe HRT to women even though it had never been tested in long term studies. HRT reduced symptoms related to menopause. They weren't sure how much testosterone should be mixed in with the estrogen to mitigate estrogen's negative impacts so many people took a combination. The study tested this combination. According to the research, women taking estrogen had a higher rate of heart disease, even though it was thought to prevent heart disease, and higher rates of breast cancer. The study findings are argued as to who should be on HRT and when and it depends on the physician in terms of what they recommend. Redmond got breast cancer shortly afterwards while taking HRT and now can't take HRT again. Now prescribing HRT is a discussion rather than an automatic thing.

Keywords: Clinical Trials; HRT; Hormone Replacement Therapy; Menopause; Women's Health

00:53:45 - Various changes in childbirth

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Partial Transcript: MM: Kind of in a similar vein, you mentioned that women then were, had not been satisfied with their experience giving birth...

Segment Synopsis: Women were given a twilight sleep drug. They could actually feel the pain but couldn't remember it when they woke up, but they have since stopped doing that. There was a trend towards midwifery to make the process less medicalized and to give women some control over their childbirth. There was a trend towards breastfeeding. The pregnant woman now has more power over her own experience and female practitioners can relate more easily to some patients. Redmond worked in OBGYN until she retired and there is still a process where the physician comes in at the last minute to 'catch' the baby and isn't with the woman throughout the delivery. There are still lots of C-sections, which would be less likely to happen if more women used nurse-midwives. It's changed, but Redmond doesn't think it has changed enough.

Keywords: Breastfeeding; Childbirth; Nurse-midwife; OBGYN

00:56:37 - Differences between the dietary and non-dietary study groups

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Partial Transcript: MM: Thanks for those thoughts. You also mentioned, I know we talked a lot about the diet studies before...

Segment Synopsis: The low fat diet was trendy. Some nutritionists were pushing it. A lot of women that were health conscious were already eating a low fat diet and ate it even if they were not randomly assigned to it, so it was difficult to see a difference between the intervention group and the control group. There were five nutritionists and a kitchen for the weekly cooking classes and the women loved getting new recipes. They would cook and try different things in each class and come to be friends with the nutritionists. The women in the intervention group wanted to be in the dietary group so they would still do what the other group was doing.

Keywords: Diet; Intervention Group; Nutrition; Women's Health

00:59:25 - Women's roles in the health of their families

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Partial Transcript: MM: I'm wondering, you previewed some ways women were involved in the health of their communities.

Segment Synopsis: The women were the ones who communicated with their health care providers on behalf of their children or husbands. A lot of men relied on their wives around the healthcare aspects and were reluctant to go to the doctor themselves, although Redmond recognizes this is a generalization. Men now take care of their children's health more often and would take them to a pediatrician. Previously women were responsible for more of their children's health and any issues their spouse or parents might have. It was a lot of responsibility, especially for working mothers. Some women were also in charge of choosing their family's primary care provider. Lezli Redmond isn't sure exactly how many women in the study worked versus those who didn't work. She thinks there were more that didn't work, there were some that were retired, and there were some that only worked part time.

Keywords: Families; Family Health; Women's Health

01:02:35 - What set this study apart and its significance

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Partial Transcript: MM: I was also wondering, I know we've already talked a ton about differences, obviously, between this study...

Segment Synopsis: This study looked at major health issues of older women that had never been studied before, like heart disease and osteoporosis. It also studied preventative measures like the benefits of a healthy diet. Women have as much heart disease as men do but more research has been done on men who have heart disease. At the time the interview was recorded it was unclear as to whether the Covid-19 vaccine was safe for pregnant women because they hadn't been included in the studies. The study focused on the main health issues and there was a very broad observational study. The study was done with exactly the same protocols as 39 other sites in the US so all the data could be combined and analyzed. Each site could do ancillary studies depending on the staff's interests in issues that affected women of the age. One doctor did a study on Alzheimer's with the same people. A big women's health study like that had never been done before and it was an incredible groundbreaking effort.

Subjects: Clinical Studies; Medical Inequities; Women's Health

01:06:27 - Strategies to keep participants involved

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Partial Transcript: MM: I was also wondering, sort of from a maintenance perspective, was it difficult to keep the women in contact and in the program?

Segment Synopsis: It was challenging to keep people engaged. They lost women that wanted to be in the dietary intervention but were not assigned to that. The national office helped with ideas and incentives for participation, like mugs and cookbooks. They brought equipment and paperwork with them on recruitment visits so they could enroll people without forcing them to come to Madison, but then the participants still had to keep coming to Madison after they signed up. They tried to emphasize how important the study was and how important it was that the women were involved in it. They also tried to match up people who lived nearby who could travel together to their visits. The visits were flexible which made the staffing hard. There always had to be someone on site who could do blood draws, for example. They also did fun activities like the quilts that encouraged further participation.

Subjects: Incentives; Participation; Recruitment; Women's Health

01:09:05 - Future direction of WHI

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Partial Transcript: MM: Then my next question is just about, kind of, the present and future of the program.

Segment Synopsis: WHI will officially stop doing questionnaires from participants at the end of 2020 because there are a lot of observational studies people still involved. 1,800 articles have been published and articles will keep being published as the data is mined for findings. Some ancillary studies that started later will keep going but officially the study is almost over.

Keywords: Ancillary Studies; WHI; Women's Health

01:10:51 - Takeaways from her time with WHI

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Partial Transcript: MM: Let me look at other questions. Well, then turning to your own life...how did you come to leave WHI?

Segment Synopsis: Lezli was still a novice in research and running a big research study helped her become a better researcher. She had the support of the national offices, protocols, and other colleagues to help her figure out how to do it. She left after five years because she loves working on start ups and once the organization was no longer recruiting and in retention mode she thought her job was finished. A job creating programs came up at the Center of Tobacco Research and Intervention. She really likes creating programs but will never ever forget the Women's Health Initiative and the people she worked with. It was a unique and incredible experience.

Keywords: Recruitment; Research; Retention; Startups; Women's Health Initiative

01:13:09 - Current role at the University

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Partial Transcript: MM: That's great. I know you, you're affiliated with the University now and Ombuds, can you tell us what that is and about that, what you've been doing there?

Segment Synopsis: Lezli started a bunch of programs for physician interventions around tobacco and got to travel around to implement them and was with the organization for ten years. In the 2008-9 recession she was worried about budgets and it became hard to find money to pay staff so she went back into women's health, particularly OBGYN. She retired a couple years ago and came back to the University as an ombuds. She helps people struggling with work issues, talking it over with them and coming up with options to improve their situation. She only works part time, which allows her to fulfill her other commitments.

Keywords: OBGYN; Ombuds; UW-Madison; Women's Health

01:15:27 - Final thoughts

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Partial Transcript: MM: Yeah, great. Well, those were all of the questions I had. Is there anything else you wanted to talk about today?

Segment Synopsis: Lezli had questions about archiving information about the interviews and the questions she'd collected. She felt honored to be part of WHI and was very impressed by the women of Wisconsin. She still has a major soft spot in her heart for WHI. She was involved in a very ambitious but underfunded project, and it was a fun challenge for her to get it up and running. She will always remember the people she worked with. She wants to give the interviews to the women's descendants to let them know more about what their mom contributed during her time in the study.

Keywords: Interviews; Oral History; WHI

01:17:48 - End of second interview session