Chapter 05: The Patient Education Office in the Early Eighties; An Innovative Philosophy of Patient Education
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Description
Ms. Villejo explains how, in 1982, she came to MD Anderson as a Health Education Specialist in the Office of Patient Education at MD Anderson. She then provides a portrait of the Office’s scope and approach to education at that time.
She explains the types of educational materials and how they were organized by treatment areas. She talks about how educational content was developed and explains the main goal of the educational materials –to involve the patient as a decision maker in his/her own treatment.
Ms. Villejo explains how her view of patient education was shaped by her mother’s experience with breast cancer in 1980.
Identifier
VillejoL_01_20150507_C51
Publication Date
5-7-2015
City
Houston, Texas
Interview Session
Louise Villejo, MPH, MCHES, Oral History Interview, May 07, 2015
Topics Covered
The University of Texas MD Anderson Cancer Center - An Institutional Unit; Joining MD Anderson; MD Anderson History; Institutional Mission and Values; MD Anderson Culture; Education; Information for Patients and the Public
Transcript
Tacey Ann Rosolowski, PhD:
So tell me about coming here. How did that all take place?
Louise Villejo, MPH, MCHES:
Well, Kathy Crosson, who I’m—actually we wrote a chapter together with Cezanne Garcia, and we’re actually rewriting that chapter right now. It was more than five years ago that we did it. Gosh, it was six or seven years ago. So we’re updating it. So we’re still working together. She was the director. She was the first director. So MD Anderson was the first comprehensive cancer center to have an organized patient education program. And so I think it says a lot about the support that we’ve gotten from the beginning from the leadership here at MD Anderson. It was Dr. LeMaistre, Dr. Conrad, and we reported directly to Dr. Conrad. He was the VP for Patient Care. And Ms. Hilkemeyer had a huge impact on that. Ms. Hilkemeyer was the director of Nursing. I always used to tell her she was the patron saint of patient education because she was so supportive.
Tacey Ann Rosolowski, PhD:
Why do you think MD Anderson had taken the lead to create a patient education center?
Louise Villejo, MPH, MCHES:
I think that they saw the importance of communications with patients, and patients, to be more involved in their care, needed to know more about their disease and treatment. And it’s just ironic that now it’s mandated through Joint Commission and AHRQ and all these organizations, even when you’re writing a grant you have to have patient involvement. But MD Anderson I think was way ahead of the curve because we’ve always—I think our program is really informed by patients and family members. And we’ve always done focus groups with patients and family members when we’re developing resources and have them evaluate materials. I think the difference now is that they’re much more involved in a lot of the processes here. And they’ve formed a patient experience program which is headed by Kay Swint here. And we have our Patient Education Office. And there’s just a tremendous amount of support. The Patient and Family Advisory Council was just developed. We’re having our first anniversary this month. It’s been a year. And I know that Kay chairs that and I know that she with patients and family members—and gets a tremendous amount of requests to have patients involved, family members involved in this committee and that committee. So it’s going to be tremendous as we integrate them into everything that we do. Who better could give us feedback on the best way to improve the patient experience? So exciting times.
Tacey Ann Rosolowski, PhD:
Yeah. Absolutely. And a measure of how much things have changed. I mean even though this was an office very early for MD Anderson, it’s been transformed amazingly over the past years. So tell me about getting the job here.
Louise Villejo, MPH, MCHES:
So actually there were two positions open. One was for volunteer coordinator for the Cancer Information Center—Service, which was that 1-800 number that NCI has. They used to have a number of—I think they had, oh, more than thirteen, but I think one of the last numbers was thirteen across the country. The comprehensive cancer centers or whatever would have the 1-800 number. And now they’ve really centralized it more. And then there was the health education specialist in the Patient Education Office. At that time it was the director, Kathy Crosson, and one health educator. And the one was leaving.
Tacey Ann Rosolowski, PhD:
So that’s a two-person office.
Louise Villejo, MPH, MCHES:
Mm-hmm. And then the secretary.
Tacey Ann Rosolowski, PhD:
And what division was that housed in or what department?
Louise Villejo, MPH, MCHES:
We reported to Dr. Conrad, the VP for Patient Care.
Tacey Ann Rosolowski, PhD:
OK. And that was a Division for Patient Care? Or Department of Patient Care?
Louise Villejo, MPH, MCHES:
Probably Division of Patient Care, because it was obviously organized a lot differently back then. But he was over all the hospital and clinics and so forth.
Tacey Ann Rosolowski, PhD:
So in 1982 you begin. What did that operation look like at that time?
Louise Villejo, MPH, MCHES:
Well, it was very well organized. And it was obviously a huge operation. Because just beginning, and beginning to develop programs, of course a needs assessment was done, so—
Tacey Ann Rosolowski, PhD:
And are you talking about the Division of Patient Care at this point?
Louise Villejo, MPH, MCHES:
No. Patient education.
Tacey Ann Rosolowski, PhD:
Patient education, OK.
Louise Villejo, MPH, MCHES:
So obviously they were doing patient education at that time. It just wasn’t in an organized fashion. And so there was a lot of needs assessment being done as far as how are you teaching your chemotherapy patients, what resources are you providing to them, and so forth. So we went by treatment area, but by centers. So we had a committee for each center. And they were all interdisciplinary committees or multidisciplinary committees, inpatient and outpatient. So that was a great communication mechanism too even between staff, because here now of course we’re so big, there’s not a lot of committees where inpatient and outpatient are working on the same thing.
Tacey Ann Rosolowski, PhD:
Now I think I’d like you to help me understand the kinds of materials you were providing for patients at that time. What did it look like? I mean if I were a patient coming in, what would you put in my hands or send my way?
Louise Villejo, MPH, MCHES:
So we had a lot of cards. So they were like maybe five-by-seven. And it was just like the educational material that you see now, but we had chemo cards, and we had treatment diagnostic imaging type cards, and information about your disease and treatment kind of cards. And we had brochures that were chemotherapy, radiotherapy, and that kind of thing. And back then when I started we didn’t use computers. We wrote on yellow pads, and then the secretary typed it up. And so we didn’t develop our own materials. We would send it to Medical Graphics. And then Medical Graphics would do a layout. And then we would send it to the Print Shop. And Ken Weaver was head of the Print Shop at that time. And if you can believe this, he would read those cards and send it back to us if he found a typo. (laughter)
Tacey Ann Rosolowski, PhD:
Oh wow. Why did he do that?
Louise Villejo, MPH, MCHES:
Because he was just involved in everything. I mean I guess I can’t even imagine somebody doing that now. But it was a much smaller place back then and so—
Tacey Ann Rosolowski, PhD:
But he didn’t feel he could correct that typo. He wanted you to do it.
Louise Villejo, MPH, MCHES:
Yeah, he wanted us—well, because they were just printing it. So we would have to go back to the layout. So he was just being helpful. He was just another pair of eyes, because as you know as a writer, you can read things a million times and then somebody’ll go, “What a typo there.”
Tacey Ann Rosolowski, PhD:
Yeah, it just jumps right out at them, and you’ve been looking at it for months, yeah, still not seeing it.
Louise Villejo, MPH, MCHES:
Exactly.
Tacey Ann Rosolowski, PhD:
So where did the information come from on these cards? How did you collect it?
Louise Villejo, MPH, MCHES:
So we had those multidisciplinary committees. And then we had a standard template. For the chemo cards it was what does this drug do, what are the side effects, what can you do, when to call the doctor, that kind of thing. So there was a template that you filled out. And so on the committees I mean we had the heads of the departments sitting in on those committees. The doctors. Like on our Head and Neck, Dr. Goepfert, who was the head of Surgery and Head and Neck. Dr. Byers. We had several people from Nursing Education. The nurse manager, which was now the CAD, and people from Inpatient, Dietary, Social Work, everybody would sit in. And then we would divide up. OK, now this is what we need for organizing the program.
Tacey Ann Rosolowski, PhD:
So am I right in assuming from this discussion that everybody pretty much agreed that this was a good thing?
Louise Villejo, MPH, MCHES:
Oh, absolutely. I think that one of the things, and I didn’t hear it from his mouth, but I understood that when they developed the program, Dr. Conrad, who was VP for Patient Care, told the doctors, “You will work with these people to develop the patient education program.” So then everybody was on board.
Tacey Ann Rosolowski, PhD:
So what did Dr. Conrad and you and that Patient Education Office, what was the impact you expected to have? I mean you talked a little earlier in a nutshell about what the mission was. But how did you expect this to filter out and actually have an impact on patients, and maybe clinicians too?
Louise Villejo, MPH, MCHES:
Well, we really wanted to help the patient manage their disease and treatment, help them cope, help them know what was going on, help them take action when they needed to, or know when to take action. One of the stories that I’ve mentioned before was my mother was a breast cancer patient in 1980. And that was way before a lot of resources were available. But they did have the ACS program Reach to Recovery. At that time you had to have a doctor’s permission for a volunteer to come and meet with you. And when my mom had breast cancer the doctor didn’t want to give permission for the volunteer to come meet with her. And I was just furious. But my mom and dad were like well, the doctor probably knows best. He probably knows something that we don’t know. And I was just furious. So that was another driver. It’s like she didn’t know anybody that had had cancer before. We didn’t know anybody that had cancer before. She was only forty-nine. And it just to me became more important to make sure that people had the resources that they needed.
Tacey Ann Rosolowski, PhD:
Where was your mother treated?
Louise Villejo, MPH, MCHES:
Saint Joseph.
Tacey Ann Rosolowski, PhD:
OK. And I mean it goes to a related question that I had. I mean first of all I empathize with you. That would have been very hard to watch a family member be hamstrung in that way. Not get something they needed. Very upsetting. But goes to that larger issue too of how still in the early ’80s people really looked on doctors as authorities slash gods. What they said went. And did you find that there was a challenge in getting patients to embrace their role as decision makers and gatherers of information about their own health care? What was the situation regarding that at the time?
Louise Villejo, MPH, MCHES:
Well, I mean in the beginning I think because the doctor or the nurse was saying, “This is your chemotherapy,” they would do the teaching, which obviously they still do. And then it was supplemental information. So I think that people were able to use that. And we did expect a certain amount of self-care. Not anything like we expect now. For example when my mom had breast cancer in 1980 she was in the hospital for almost a week. And the wound catheter drainage was this huge machine on the side of the bed. Now people might go home a couple hours after surgery. And they have everything portable that they take with them. So they definitely have to do a lot more of their self-care. So I think people have demanded it more. I mean again, when we go back to like the civil rights movement back in the ’70s, started in the ’60s or whatever, and then it really—with AIDS they started demanding the information. They demanded better care. Breast cancer patients came up and they started demanding for more focus on this disease and treatment. So then of course now we have a different advocacy organization for a lot of different diseases, probably almost everything. So I think that that has really pushed health care to providing more information, because it’s expected.
Tacey Ann Rosolowski, PhD:
Expected, yeah.
Louise Villejo, MPH, MCHES:
But I think still people come to MD Anderson. And I heard this actually from a friend of mine that came here. And they came and they talked to her about her disease and treatment and said, “These are the options.” Blah blah. And then they walked out of the room. And she just turned and looked at me and said, “Why are they giving me options? I came to MD Anderson because they would know exactly what to do. They’re the experts. Why are they asking me?” So I think people still, some people, and most people still want like you’re the expert, you see this day in and day out, what would you do, give me some guidance on this.
Recommended Citation
Villejo, Louise and Rosolowski, Tacey A. PhD, "Chapter 05: The Patient Education Office in the Early Eighties; An Innovative Philosophy of Patient Education" (2015). Interview Chapters. 1520.
https://openworks.mdanderson.org/mchv_interviewchapters/1520
Conditions Governing Access
Open
