Chapter 16: The Patient Education Office Supports MD Anderson Initiatives
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Description
Ms. Villejo talks about support that her office provides to the Patient and Family Advisory Committee, Nursing, the Advanced Care Planning initiative, the Psychosocial Council, and the Survivorship Program.
In the process she shares a personal story about insights she has gained from witnessing her mother’s battle with cancer. [Clip about two minutes.]
She notes that she led the Networking Committee as the Survivorship Program was being established (2007) to look at similar initiatives at other cancer centers.
Ms. Villejo tells the story of how Patient Education was invited to create a learning center in the new Cancer Prevention building.
Identifier
VillejoL_03_20150605_C16
Publication Date
6-5-2015
City
Houston, Texas
Interview Session
Louise Villejo, MPH, MCHES, Oral History Interview, June 05, 2015
Topics Covered
The University of Texas MD Anderson Cancer Center - An Institutional Unit; Professional Practice; The Professional at Work; Collaborations; Building/Transforming the Institution; Multi-disciplinary Approaches; Growth and/or Change; MD Anderson History; Institutional Mission and Values; MD Anderson Culture
Transcript
Tacey Ann Rosolowski, PhD:
Well, it’s interesting because as you’re describing these tensions with the experts, it’s almost like people don’t really know what you do. They don’t know what you’re bringing to the table. And so it sounds like that in itself was an education process. What is the service that you are offering to clinicians and these multidisciplinary care teams? And how do you fit in?
Louise Villejo, MPH, MCHES:
Exactly. And I think to this day it’s a continuing education for clinical staff and really leadership. That’s something that we have to continually do is promote how we can be of service, what we can do to help develop educational programs. We’re not stamping our names on anything. And really here developing resources at MD Anderson, we really try not to put anybody’s name on materials, because this is part of your work. This is part of what you do. And people change here, like anywhere else. And so the names are going to change. And what’s the important thing? The important thing is giving the information to the patient, and not that you have authored something. So we really try not to put names on educational resources.
Tacey Ann Rosolowski, PhD:
Interesting. Yeah, that must bug some people.
Louise Villejo, MPH, MCHES:
Yeah. And some insist on having their names on there. But that’s our policy going forward. If they insist then sometimes we do.
Tacey Ann Rosolowski, PhD:
Yeah. And I can see both sides. But yeah, very interesting.
Louise Villejo, MPH, MCHES:
Like for example when I came here there was a leukemia guide for patients. And so as we updated it over the years that I worked with the Leukemia Service, a lot of people have gone, and staff has changed, and now they’re doing—I was laughing because they’re doing an update this year, another update. It’s like since what? They developed that in 1980. And so you can imagine that it’s really—
Tacey Ann Rosolowski, PhD:
Different document.
Louise Villejo, MPH, MCHES:
Very different document. And one of the funny things too is we used to have little cartoon characters in place of patients or family members. And of course we don’t do that at all anymore. We have much higher graphics standards these days and a lot better resources too.
Tacey Ann Rosolowski, PhD:
Interesting. Huh. Interesting. You had mentioned this book chapter. And I’m wondering. Is that aligned with some of the things we’re talking about right now? The material that you covered in that book chapter?
Louise Villejo, MPH, MCHES:
Mm-hmm.
Tacey Ann Rosolowski, PhD:
Can you tell me a bit about that?
Louise Villejo, MPH, MCHES:
Well, the book chapter is in a book on health promotion. Developing health promotion programs in different settings. So the first part of the book is how to develop a health promotion program from literature reviews to looking at the different resources, talking to patients and family members, how to implement and evaluate and use theoretical models. And then they have several chapters at the back of the book on health promotion programs in different settings. So it’s workplace, community, school, and health care settings. So the chapter that I was involved with with Kathy Crosson and Cezanne Garcia is about health promotion in health care settings. And we talk about really the change in health care. There’s always been patients getting information about their health care. But it has become more increasingly integrated into guidelines in health care organizations. And I’m trying to remember the report. Healthy People. I think that started in 1990. And every ten years they do another one. American Hospital Association was one of the first ones to integrate in their guidelines the importance of patient education, involving patients in health care. And now the Affordable Care Act, this is the first time that it’s mandated that insurance companies provide preventive and screening for health promotion. And so all of those changes in health care have really raised up the importance of patient education, health education, health promotion, and involving patients. And that has been proven in the literature to increase adherence and healthy behaviors. Of course that’s our whole point is to change behavior and help people know what is better to do or not do. Because a lot of the illnesses of course that we know can be prevented by diet and exercise and not smoking, not drinking too much, and so forth. So just reinforcing those messages and involving patients and family members has become very important. And also what is really coming into the literature too that MD Anderson has been doing forever is the interdisciplinary team. So there are very specific guidelines on how important it is to work as an interdisciplinary team, to include the patient, and to care for the patient and family member. And I believe it’s Joint Commission and the American Hospital Association have written papers and guidelines about the importance. And they’re even trying to look into medical school, nursing school, nutrition, and have the students start doing that as they’re in school and not just jumping into a hospital or health care setting and never having really worked in an interdisciplinary setting. So I think MD Anderson has really led the way in that area. I mentioned before when we first started we would have patient education committees. And it was a whole interdisciplinary team, inpatient and outpatient. So that’s obviously very important. And then there’s a lot of evidence-based practice around developing educational programs involving patients. Of course patient-centered care is really mandated through a lot of the regulatory agencies now. And as you know, MD Anderson has really started taking big steps in that area. We celebrated our first year of our Patient and Family Advisory Committee.
Tacey Ann Rosolowski, PhD:
I was just going to ask you about that.
Louise Villejo, MPH, MCHES:
Mm-hmm. And that committee, they’ve been wonderful. And they have really stepped up to the requests that we’re getting now from all over the institution.
Tacey Ann Rosolowski, PhD:
Now did you become a member of that committee? Were you a member from the beginning?
Louise Villejo, MPH, MCHES:
Yes. I helped. Kay Swint has been leading the committee and a group of us went to the Institute for Patient- and Family-Centered Care conference. And then we started working on developing that committee. Got the institutional support to really raise—to do that. And of course in our area we’ve done that for—I mean that’s part of what we do. But this was incredibly important to have that institutional mandate.
Tacey Ann Rosolowski, PhD:
Why has it taken so long, do you think, in medicine for institutions and even individual practitioners to get their head around the fact that yeah, it’s a good idea to have patients involved?
Louise Villejo, MPH, MCHES:
I think that we might be afraid that oh, well, we’ll have to do everything that the patient says is important. And they don’t know our processes and they don’t know the complexity of this and that and the other. And they might not understand or really be able to be eloquent enough to get their points across. And of course all of that has been shown to be not the case at all. I mean this is a huge initiative. It’s really international. They have international patient/family-centered care conferences and they’ve had them for years. I think the meetings that I was at in the last few years here at Anderson, when we would be talking about developing a program for patients, or for example putting outcome data, what do patients want, what do they need, and I would say, “Well, why don’t we have some patients on the committee?” Well, we’re not ready for that yet, we need to get further down the road. Of course that would be the best time to get the patient on the committee, to see exactly what they want. And with that specific group there were a lot of patient focus groups. And so that was a great way to get patients and family members involved. But that’s my perspective of why we hadn’t really gotten that. Because of course as I had mentioned before, we’ve always done patient focus groups. In the early ’90s I was involved with Picker/Commonwealth. And they really started from my perspective a lot of this patient-centered care. And so—
Tacey Ann Rosolowski, PhD:
Is that a cancer center?
Louise Villejo, MPH, MCHES:
No, Picker/Commonwealth is an institutional initiative that is really focused on—it’s an organization that was funded by Mr. Picker. And he actually came. They had I think their first conference in New Orleans and he came and spoke to the group at a luncheon meeting. And I was presenting about our efforts here at MD Anderson in the Learning Center and patient education program. There were efforts in the Children’s Cancer Hospital. And so I was asked to present about that. And we had people from New York Cooperative Care Center that were actually bringing patients in for a couple days just to teach them and get them engaged in their care. Just very focused on not getting the clinical care but just the education. And Planetree I mentioned before. And so that was some of the first efforts that we were able to be involved with with patient/family-centered care. And then it basically just has kept growing from then. But I think with the Patient and Family Advisory Council and the Patient Experience Department that Kay Swint is now over, that’s really bringing institutional focus. And of course she’s looking at a lot of the patient satisfaction surveys and our processes here, what would patients be interested in, I think that kind of thing.
Tacey Ann Rosolowski, PhD:
What are some examples? What are some issues that patients are bringing to everyone’s attention?
Louise Villejo, MPH, MCHES:
Well, some of the things, when we had our first little patient/family-centered care committee before the institutional committee, we always heard the same thing. It was parking always number one. Wait time. Just not really feeling like there was a continuity of care in some ways. And one of the things that Nursing implemented that I think has had a huge impact on that in the inpatient is when they have a bedside report. And so instead of the two nurses standing outside of the room and updating each other in the change of shift, they actually do it with the patient.
Tacey Ann Rosolowski, PhD:
Oh wow.
Louise Villejo, MPH, MCHES:
And so that really brings the patient into being able to contribute or hearing what’s happening and then saying, “Well, this is my perspective. And this is important to me.” And those kind of things.
Tacey Ann Rosolowski, PhD:
Well, that’s a great example, because I was remembering even in our first meeting you were saying that the goal of patient education is to really involve the patient as a director of their own health care process. And that’s a great example of how that’s happening.
Louise Villejo, MPH, MCHES:
Yes, absolutely. So one of the things that I’ve worked with a group here is advance care planning. And it’s been a tremendous undertaking under the Psychosocial Council. Dr. Zhukovsky, Dr. Gaeta, and Karen Stepan and Margaret Meyer in Social Work have led that group. And they came to the Patient and Family Advisory Council to give them an overview of the resources that we had developed. And a lot of the educational resources which I was involved with of course we had had patients and families giving us input. So we have a Web site with that. And they were saying, “Now when we want to bring up this discussion when you come into the clinic or into the hospital, what’s the best way to do it?” And what we had found before was that when they were told that of course we needed advance directive, they started worrying. Well, what are they trying to tell me? I need an advance directive? I need a power of attorney, living will? Are they trying to tell me that my cancer is worse than—and so a lot of feedback, that was a great discussion that they had with our patients and family members at the Advisory Council about the best way to approach that. And one of the patients gave the example of when she went in for a clinic visit and she thought it was a regular visit and they came in and started talking to her about advance directives. And they were just mortified. They just were beside themselves because they were like why are they telling us this now, what’s going on. So they can really help us in engaging them in that discussion without making it be so worrisome or them to be devastated. This is just part of our processes and we want you to be involved in this discussion because we need to know what your values are, what your wishes are, if it ever comes to the point that you can’t speak for yourself. So that’s been a great great collaboration.
Tacey Ann Rosolowski, PhD:
It sounds like it, yeah. I mean that issue of advance planning has come up in a couple of interviews. People saying that this is—now you have to talk about it. It’s part of the quality evaluation of clinical performance that this issue is raised. But a lot of clinicians don’t feel terribly prepared to do it in a way that won’t traumatize the patient.
Louise Villejo, MPH, MCHES:
Well, and this group has really developed the infrastructure and the educational materials and the clinic notes so there is an infrastructure and a training so that they can open up those discussions and have those discussions. I mean even from a personal perspective, here I am in the middle of working on all these things, developing the educational materials, and talking to patients about them with clinical staff and so forth. And my mom is dying of cancer. And it is a difficult—even though I know to do it, it’s a whole different leap. Luckily my mom was the one that initiated those conversations. She was very open about it. She wanted to be very clear. She was always a person that had her little ducks in a row. She wanted everything to be organized and people to know about it. So here I’m in the middle of doing this and she really is the one that led that discussion. Of course I had ideas of what kind of things to talk about. But she was the one that really brought it up. It was really difficult for me. Yeah, to do that.
Tacey Ann Rosolowski, PhD:
What insights have you gained from going through this experience with your mom?
Louise Villejo, MPH, MCHES:
That you can work at a place and develop all the educational materials for thirty-three years, but when it’s you and your mom, everything goes out the window. And you are just struggling to manage everything and try to be on top of everything. And there are a lot of balls in the air. And when we talk about one of the big projects we worked on before was teaching about medications. There’s so many medications. And oh my God, they’re changing. Every time we go to the doctor, OK, we’re not going to do this anymore, we’re going to do this. And having all the pills and the boxes. And just keeping up with everything, it’s just incredible. And so we shouldn’t question why they might not be doing it right or following instructions or whatever. We should keep trying to make it as easy as possible and getting feedback from our patients and family members, and reaching out to them when they’re home. I know one of the patients, I was on a panel with one of the patients from the advisory group. It was Patient Safety Week. And he was talking about I had the surgery, I had the greatest care, everybody was wonderful, I had the surgery, and then I just felt like I had been cut off. Nobody called me to see how I was doing. I just felt lost. And so there are efforts now to put in place to make sure that we’re reaching out to people, following up, and doing those things that the patient needs.
Tacey Ann Rosolowski, PhD:
Right. How do you transition someone from being a patient to being a survivor?
Louise Villejo, MPH, MCHES:
Exactly.
Tacey Ann Rosolowski, PhD:
And being a survivor you still need care. You still need support.
Louise Villejo, MPH, MCHES:
And that’s another wonderful program that the institution has developed is the Survivorship Program. And I was involved with what they called the Networking Committee. So when they started the Survivorship Program they had a very small staff, maybe three or four people. And a number of committees looking at research, looking at the clinical efforts, looking at education. And the committee that I led was called the Networking Committee. So what we did was really look at the landscape and see what was going on in survivorship in other cancer centers and in other leaders in that area. And the National Cancer Institute had just developed a manuscript on survivorship. And they had sent out a questionnaire to different cancer centers and then they collated all that so you could see. So I made a spreadsheet. And so we could see what they were doing, what kind of services they were offering. And then a small group went to I think about three different centers to get an overview. And that was I want to say maybe we started that in 2007. But don’t quote me on that. And if you look at our Survivorship Program now, it is one of the most comprehensive. And really the research and the clinical care. I think we have survivorship clinics now in almost every center. And so like I said with MD Anderson you have a big idea and it can—I used to tease the director of survivorship, Fran Zandstra, and tell her—if you remember that commercial about Verizon, there’s like hundreds of people behind that one guy. He said, “This is Verizon.” I said, “That’s the survivorship. You have like hundreds of people on all your committees and have really developed that.” Of course with her leadership, but it’s an amazing program now. Survivorship, Cancer Prevention. I remember when Cancer Prevention was a small little program. And now it’s incredible work that they’re doing. It’s just amazing. And whole building. Who else has that?
Tacey Ann Rosolowski, PhD:
Yeah, exactly, exactly. Dr. LeMaistre’s leadership there.
Louise Villejo, MPH, MCHES:
Mm-hmm. Dr. LeMaistre, Dr. Levin. And as a matter of fact I mentioned that we started our Learning Center in the Rotary in a little room. And one of their visions in Cancer Prevention was to have a Learning Center. And so they invited us to—we had that little program. And so they invited us to develop the Learning Center in Cancer Prevention. And one of the visions too was that it was going to be open to the public, which it still is. And they had—and I was lucky to be involved in the planning of their center over when they were just across the street in just one center. And so they had actually identified clinical rooms that were going to be the teaching rooms. And their health educators were going to teach patients and family members about health education, exercise, nutrition, just having a healthier lifestyle, which now they have the Healthy Living Clinic. I don’t know if you know. They have a garden out here too.
Tacey Ann Rosolowski, PhD:
No, I didn’t know that.
Louise Villejo, MPH, MCHES:
Mm-hmm. And so that was their vision. And I was lucky enough to be able to work with them. And so when we opened the Learning Center and then over time I think they saw that they wanted to focus more on clinical programming and so they—I actually have the memo here when they transferred that Learning Center over to us, and took it over. But we were lucky to come into their vision and be part of that. And then that helped us grow our program too. So it was a great collaboration.
Recommended Citation
Villejo, Louise and Rosolowski, Tacey A. PhD, "Chapter 16: The Patient Education Office Supports MD Anderson Initiatives" (2015). Interview Chapters. 1531.
https://openworks.mdanderson.org/mchv_interviewchapters/1531
Conditions Governing Access
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