Chapter 11: Patient Education --Developing Programs by Involving Patients; CancerWise
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Description
Ms. Villejo first talks about the community education program, CancerWise, then speaks at length about her Office’s policy of involving patients when educational materials and programs are developed.
She sketches the different ways in which patients are involved to provide feedback and guidance in order to tailor materials to different age groups and cultural backgrounds. She notes that MD Anderson’s Patient and Families Advisory Committee has reached its first anniversary and she sketches results of its work .
Ms. Villejo talks about her work with Kathy Meade on the Cancer, Culture, and Literacy Conference, including running sessions on developing educational materials for Hispanic audiences.
[The recorder is paused]
Identifier
VillejoL_02_20150521_C11
Publication Date
5-21-2015
City
Houston, Texas
Interview Session
Louise Villejo, MPH, MCHES, Oral History Interview, May 21, 2015
Topics Covered
The University of Texas MD Anderson Cancer Center - An Institutional Unit; Institutional Processes; Institutional Mission and Values; Information for Patients and the Public; Gender, Race, Ethnicity, Religion; Beyond the Institution; Discovery and Success; Diversity at MD Anderson
Transcript
Louise Villejo, MPH, MCHES:
So like Anderson has been involved in a lot of community projects. And one of them—I forgot the name of it. It was in collaboration with Rice University. And so I know myself and another administrator would go out to Lee High School and we would do programs for them and do mentorship. So that was something else that I was involved with.
Tacey Ann Rosolowski, PhD:
And this is specifically minority mentorship? I see.
Louise Villejo, MPH, MCHES:
Mm-hmm. Mm-hmm. Mm-hmm. So we would be involved with that. So I’ve done—
Tacey Ann Rosolowski, PhD:
And was this under MD Anderson with the intent of getting people into health fields?
Louise Villejo, MPH, MCHES:
No. You know what it was, I would have to—I think it’s on my resume. It’s Rice University something science student project.
Tacey Ann Rosolowski, PhD:
OK, I’ll have to take a look.
Louise Villejo, MPH, MCHES:
Yeah. I don’t remember exactly. Now this was a while back too. But there were always a lot of opportunities. I’ve worked with Public Education, and they used to do cancer information programs in the community targeting Spanish-speaking audiences. And so I worked with—Jo Ann Ward was the head at the time, worked with her. We did a lot of work with them because of course with the health education background and the program development background we would work with them to develop programs, like what is now Cancerwise, where they send people out into the community. And so one of those major initiatives was targeting the Hispanic community, which they still do.
Tacey Ann Rosolowski, PhD:
So you were involved with establishing Cancerwise?
Louise Villejo, MPH, MCHES:
Yeah.
Tacey Ann Rosolowski, PhD:
Do you want to tell that story now?
Louise Villejo, MPH, MCHES:
Well, it was something that Public Education—at that time it was called Public Education, it’s Community Relations and Education now. But they were developing Cancerwise. And so when we started working with them, we had these teaching plans for clinical staff to develop the patient education programs. And so we started using that template for the community speakers. And we would have—it’s basically who the speaker is, what the content is, what the objective and the content, and then what resources are you going to use. So that’s how it started. And it was an interdisciplinary group. So I remember Social Work and Chaplaincy. And we all came together to develop the programs. I think from the beginning we’ve always had a very interdisciplinary program development stance. And one of the exciting things for me now is that Joint Commission and American Hospital Association, I mean that’s in their guidelines and blueprints. It should be interdisciplinary. They should be teaching interdisciplinary in the schools, in the medical school and the dietary school. All those. Or clinical nutrition. Because when they get here they have to work together. And when they’re in classes they really don’t so much. So I mean that to me is very exciting because that’s really I think one thing that Anderson with our multidisciplinary care centers have really led the way on, MD Anderson has.
Tacey Ann Rosolowski, PhD:
So what were some of the impacts of Cancerwise? What was the goal and what’s been the outcome of that?
Louise Villejo, MPH, MCHES:
Well, the goal was to educate the community about cancer and cancer prevention. And so they’ve done—I mean we’d have to get their data because that’s really their program—a tremendous job in outreach into the community and high schools. And I think almost really developing a pipeline of students, as they do outreach into the community, bring the kids here to MD Anderson. That makes a big impact on children and what they think that they might do. And I know that they have done a lot of outcome studies. So they’re not just going out and educating. They really look at what the impact is. So that would be something that would be great to find out from them. But basically what we were doing at the time was just developing the modules. And believe me, I’m sure that they have been revised fifty million times and updated. But that is a very very important role that MD Anderson plays in the community.
Tacey Ann Rosolowski, PhD:
A related question. I feel like we’re picking up a lot of different threads of stories here. Hopefully we’ll weave them all back together. But I’m wondering. You came to this job as an education specialist. Was there a particular theory of education or method that was your preferred method? And has that changed over time as you’ve learned about learning styles and what patients here at MD Anderson and in this community need? More of an abstract question about your professional practice.
Louise Villejo, MPH, MCHES:
I think one of the main things that has driven me other than like health behavior theories and always try to keep on top of what is best practices, the theoretical models and so forth, but to me—and this is really the perfect time, it’s happening right now is—I feel like our programs have been informed by the patient. We always have been getting patient feedback on program development, on materials development, on all of our videotapes that you see. We always interview patients. Because that’s the one thing people want to see. How did that person cope with this? How did they manage those side effects? What is their perspective? And that I think really gives them hope to see somebody else. That person is like me. They have the same disease and treatment. And I mean one of the things that I always loved to do was focus groups with patients. So that we would—say we’re thinking about developing an initiative or we have a program already. What kind of—getting that feedback from patients. And now we have our Patient and Family Advisory Committee. Now patient-centered care has really moved from physician-centered, institution-centered care to really focusing on the patient. And I think before—like in even the last few years, people were like yeah, we’ll do that, but let’s get this to this point, and then we’ll invite the patient in. And now people are seeing, and it’s in the literature, that it makes a great impact to have the people that you serve involved. And I mean that goes back to my community involvement. And that goes back to—I just finished working on a chapter with some colleagues about health promotion in health care settings. And really it did start back with we had the civil rights movement, we had the women’s movement, we had AIDS, we had breast cancer. And so that activation led to people wanting the information that they needed, being treated the appropriate way, being involved in their care, being listened to. So I think that really shows the scope of how that all really ties together. And so now it’s very very exciting times. That is in the guidelines. It’s in the standards of Joint Commission, of American College of Surgeons, of American Hospital Association, Agency for Healthcare Research and Quality, National Cancer Institute. Patient/family-centered care is in the guidelines. You must do it this way. This is best practice. This has been proven. This is evidence-based. Even with grants and contracts. Do you have patients and family members on your committee to do this work?
Tacey Ann Rosolowski, PhD:
Wow. Wow.
Louise Villejo, MPH, MCHES:
It’s really exciting.
Tacey Ann Rosolowski, PhD:
Now when you began involving patients and families into these processes, how did they surprise you? What were some things you learned that you just had not expected?
Louise Villejo, MPH, MCHES:
I think the thing that has always struck me the most is that they say the perfect thing. I mean their experience is exactly what you would want them to say as far as teaching other patients or giving feedback about a certain issue. Especially on the videos. I mean if you go to the videos it’s like it’s so hard to edit because they just have such great experiences to share that would be helpful for other patients. But of course you have to focus it in. But I have never been disappointed on any interviews or feedback that I have received. And of course that’s now going to be very excitingly again part of our fabric is that we are going to have patients and family members. So that’s always been part of what we do. But I think with Barbara Summers and Kay Swint they’ve taken it to the next level. So even though we’ve done that they have really gotten the institutional support for that committee.
Tacey Ann Rosolowski, PhD:
And they’re heading up the Patient and Family Advisory—
Louise Villejo, MPH, MCHES:
Kay Swint heads up the Patient and Family Advisory Committee. So we had our first year anniversary Tuesday of this committee. And the patients and family members got up and talked about how meaningful it was to them. And one of the patients, a man with breast cancer, and he said, “This is so important for me.” He goes, “I don’t want to be like rallying around.” He goes, “But this is so important to me that I can be part of getting the word out about how men need to be aware that men get breast cancer.” And so he is just very excited about being—he was invited to be part of a group that’s going to head that up. And he was very excited about that. And another gentleman. He had been like the CIO of one of the gas companies. And he said, “When I first came here I thought oh yeah, they’re going to ask us questions and we’re going to tell them. But nothing’s going to change.” He goes, “I have seen things change. I’m just very impressed about the impact that we have made. And it’s only been a year.” And Kay said she can’t go anywhere or do anything without people saying, “We need patients for this, we need patients for that.” And so it’s really really gotten a lot of traction. And it’s very exciting. Where I would love—so this was our first group. And they are amazing people. But who’s going to sign up for a Patient and Family Advisory Group at MD Anderson? Probably the highly educated, higher economic status. There is some diversity there. But I would love to see that grow. And even having groups in the community so they don’t have to come to MD Anderson. But we’d go out into different communities and really get that kind of feedback. And one of the things I know that’s on the list is when we were recruiting and doing interviews for people to be on the committee, the people that didn’t live in Houston were really upset because they couldn’t make it here every month. And they have a lot of different issues. And some difficult issues as far as coming here, finding a place. All that stuff. So I know that that’s going to be one of the next pieces. And I told (laughter) so yeah, that’s one thing that I would love to stay involved with in my retirement. Yeah, because that is—I think it’s going to change the playing field, and in a really really good way. I mean I think that we can really do so much with the feedback and experience of our patients. Instead of—and this was interesting. Something that one of the staff said. When we first started the committee and somebody would say something, a staff person, well, we really have to do it that way because blah blah blah blah blah. Well, no, we don’t. And so we had to zip our lips and listen. So we have all these processes and difficulties. Well, we really can’t do it that way because—but we can. We can make changes. So that’s going to be—that’s really exciting.
Tacey Ann Rosolowski, PhD:
Interesting. Now I wanted to ask the patient involvement question from a slightly different perspective, because you’ve been talking about patients sharing their experiences so that those experiences can be integrated as educational materials. But I’m wondering if you’ve learned things from patients, understanding how they learn, or how materials need to be presented to them in effective ways. What are some ways in which patients have had an impact on the shape of these materials?
Louise Villejo, MPH, MCHES:
I think in very important ways, in that we know that people are overwhelmed when they get here, and they really don’t hear what you say. I think research has shown that patients remember about ten percent of what the doctor says a week later. That’s a doctor. That’s not an oncologist. So you can imagine after they hear the word cancer what happens there. And I think then it’s part of like adult learning theory and so forth. You have to—a really big piece for us is health literacy, because probably seventy percent of the adult population doesn’t have high literacy skills, or maybe eighty. And so we give them a lot of written materials. And so for our part we really try to write to the fifth to eighth grade reading level. And that’s not just for people that have low health literacy skills. But when you are overwhelmed by your disease and treatment, then you need something simple. Nobody wants to come in here and read scientific literature. Well, let me just say most people don’t. Because people do come to the Learning Center. They’ve read this and they’ve read that booklet and they’ve read that. But now they want a research study. And there are some people that do want that. But overall we know that it has to be looked at in health literacy. And that’s not just writing simply. That’s also the layout. Making it simple to look at. You don’t want to look at something and it’s just packed with words. Graphics and formatting and all that. And then it also has to be multimedia. Can we do it in video? I know for myself at the end of the day your eyes are tired. You’ve been reading all day or looking at the computer a lot of the day. And you get home. And I do a lot of books on tape or watch a video. If there’s a news story, if there’s a video in it, I’m going to watch the video first and not read everything. So we have to provide that same different media to our patients and family members. Now one of my soapboxes is that everybody wants everything on the Internet, which is very important. We have to be at the cutting edge. We have to have e-learning modules. We have to have video. We have to have interactive resources on the Internet. But we also have to think of people that don’t have access, that aren’t used to using those media. So we have to have a lot of different ways to reach people educationally. And one of the things I always hear, well, my eighty-year-old grandfather is always texting me and sending me things on the computer. I’m like that’s great. But your eighty-year-old grandfather is in the top ten percent of the population. So we have to make sure we don’t leave anybody behind. And I think of my little mom. My little mom was sharp as a tack. But she would get mad. She goes, “They always have that Web site when they have these advertisements. I just want to call and talk to somebody.” And so we bought her a computer. She just was never interested. And she was smart as anybody else. But she just wasn’t interested. There’s a lot of people like her. And who gets cancer? Older people. And so yes, there are now a lot more older people. But we still have that baby boomers moving through and people actually that are older than that too. So we need to make sure that everybody gets the information and that we just don’t have all our bells and whistles on a computer.
Tacey Ann Rosolowski, PhD:
Are there ways that you shape materials differently for kids or for adolescents, for different—for maybe Asian patients versus Hispanic patients? I’m just curious on how the different populations play into the strategies of what you do.
Louise Villejo, MPH, MCHES:
So with children, we’ve developed some really fun cute age-appropriate materials. A couple of folks in our office did a campaign. It was a couple years ago now. And it was very—I want to say cartoonish. But it wasn’t like a silly cartoon. But it was very fast-paced, very cute, and really grabbed your attention. It would grab the attention of a child or a young adult. And so we do try to use that. For different populations, with health literacy you really look at providing the information in a simplified format. We do translate a lot of materials with our Language Assistance Department. Now one of the things that I know for example in Public Education. They have print materials that are only going to be going to the Hispanic audience or the African American audience. So they have really done a beautiful job in targeting them as far as the people in there and the language and so forth. With our materials and videotapes we take more of a multicultural approach. So we make sure that it has a multicultural feel. Because we have to do one for a million people. Or of course the translation. So we have a lot of things. And really the clinical staff and Language Assistance folks and patients, family members, they’re the ones that give us the heads up on what are the priority items that need to be translated. So we do have that available.
Tacey Ann Rosolowski, PhD:
I think I was reading something when I was doing your background information about using a telenovela format.
Louise Villejo, MPH, MCHES:
Telenovela.
Tacey Ann Rosolowski, PhD:
Yeah. What was that for?
Louise Villejo, MPH, MCHES:
So that was probably something that I worked on a while back. And basically one of the things, like in Hispanic audiences, they might watch like what we call daytime soap operas. And so it’s been found in the literature that that is something that will keep people’s attention and help them move through and have a health message in there. So that’s something that we’ve used before. Now—
Tacey Ann Rosolowski, PhD:
How does it work? How does the format work?
Louise Villejo, MPH, MCHES:
Oh. So it’s like a comic book but the drawings look like people, they don’t look like cartoon characters. And they have drama. They have relationships. And oh, so-and-so, oh, they’re smoking, oh, well, do you know that really can cause cancer, no, I didn’t know that. Then they start talking about what are the resources available to quit smoking. Or if it’s breast cancer what should she do, she’s found a lump, that kind of thing. So it’s just woven into like a dramatized story.
Tacey Ann Rosolowski, PhD:
I can imagine I mean that’s a familiar format of information transfer. So instead of saying, “Here, read this medical thing,” which is a strange format, it’s giving the information in a familiar format.
Louise Villejo, MPH, MCHES:
Exactly. Exactly. So there are a lot of different ways to—like a colleague of mine does a lot of work with migrant worker cancer prevention and talking about different issues around cancer awareness. And what she uses is—well, it’s called transcreation. So you might have a booklet on testicular self-exam. And how are you going to get that across to a migrant population that might not be as aware of what’s in the general media? And so basically the whole point of it is just what we’re talking about. You get a group of people from that community. And then you work with them to develop even—whether it’s language or just cultural issues, cultural type taboos, what’s the best way to approach this, what’s the best way to say it. But you’re working with that community, so they’re telling you. So it’s not like we’re sitting at our desk thinking oh, this is probably what they would want, or this is what it should look like. You’re actually working with the people that is the target population. So that’s really best practice.
Tacey Ann Rosolowski, PhD:
Who’s this colleague that you—
Louise Villejo, MPH, MCHES:
Her name is Cathy Meade. She’s at the Moffitt Cancer Center. And there are people across the country that do that, but she is really a leader in the field. And she started—and I was lucky enough to work with her and be on her steering committee for the first two or three conferences—but she’s been doing this conference called Cancer, Culture, and Literacy. And she’s really led the field in a lot of the research that she’s done. She’s been involved with the National Cancer Institute in developing guidelines to write informed consents in a more low literate or health literate way and just really spelling out the guidelines on how to do that. So she’s really done a lot of tremendous work.
Tacey Ann Rosolowski, PhD:
What have been some of the other things you’ve done with her around this Cancer, Culture, and Literacy Conference? When did that start? I’m sorry to interrupt you. I mean about.
Louise Villejo, MPH, MCHES:
Yeah. I would say maybe in the late ’90s. And I probably have that on my resume. So I could tell you exactly when.
Tacey Ann Rosolowski, PhD:
I can check too.
Louise Villejo, MPH, MCHES:
So what we did as far as her national steering committee was like flesh out some of the issues and what should we present at the conference, and who are the people that are leading the work in those different areas. And then I taught for a few years one of the breakout sessions. I don’t know if it was a preconference workout or breakout session. I’d have to look at that again. But on developing educational materials for I want to say it was Hispanic audiences. Yeah, it must have been Hispanic audience. Yeah, I was going to say multicultural or different cultural audiences. And just breaking it down like step by step how do you look at the graphics, how do you look at the reading levels, what kind of words would be the best to use, how do you get community involvement to have your materials reviewed or even help to develop them.
Tacey Ann Rosolowski, PhD:
What are some of those guidelines that you offered? I mean are there things that you haven’t talked about so far? I mean I’m curious how to communicate with a Hispanic audience, how would that be different?
Louise Villejo, MPH, MCHES:
Well, it was what I’ve been saying as far as looking at the health literacy. If it’s in English, how do you look at how you phrase different things, and how they might be translated for those audiences. I mean translated, I mean thought about. What kind of graphics are you using? I mean a lot of times—I’ll never forget this, because back then I did a lot of presentations on reaching different cultural audiences. And I remember that I went to one where they had an Asian speaker, a Native American speaker, and I was the Hispanic speaker, and I think an African American. And when the Native American speaker would say—she would show the materials that they were giving out. And they were all like Anglo people in the materials. And she said, “The people would say, ‘Those poor white people, they get cancer.’” They just didn’t relate to that at all. Things have changed tremendously in the last fifteen, twenty years as far as there’s a lot of people. They call her Linda B, Linda Burhansstipanov, who does a lot of research and writing in targeting Native American communities. There’s a lot of great resources out there now. They have organizations. And they do the telenovela. Really really nice work. There’s another woman, I don’t remember her name, in Alaska that goes in little prop planes—or I don’t know how she gets around all over the place but it sounds like everything’s very very far apart—that has done a lot of great creative work in reaching different populations. But I think the whole key is to have the population involved that you’re trying to reach. And then knowing the health literacy tenets and if you’re going to translate something then you better have that target audience involved in the translation and reviewing that, because you’ve probably heard there’s a lot of different—Spanish is different from different populations. It’s just like I don’t know if you’ve ever watched English movies. Sometimes you have to put the words on there, because you don’t understand exactly what they’re saying.
Tacey Ann Rosolowski, PhD:
Scottish accents and Irish accents. Even within the US I mean I had an amazing experience when out of college I was living in Augusta, Georgia. And there were people. I was humiliated. I was working in a hospital at the time and I mean people would come and talk to me and I had no clue what they were saying, no clue. And I would have to go and get someone else. It was my first experience of that. So—
Louise Villejo, MPH, MCHES:
So that’s exactly a great example of people are like oh, Spanish is so different, blah blah blah. It’s like OK, well, just look at English. It’s the same thing. There might be a lot more different countries that you’re going to hear different words. So you definitely have to get the whole involvement. And that’s one great thing, our resource in working with Language Assistance, because they do work with people from a lot of different—not just from here in Texas but from Mexico or South America or Spain or Caribbean. So they have an ear for that. And what do we say? Just try to write Walker Cronkite English, try to write Walter Cronkite Spanish. (laughter) If anybody still remembers who that is.
Tacey Ann Rosolowski, PhD:
I remember. (laughter) Yeah, well, it is really a challenge. And I think—have you found that it took some education, working with people here at the institution, to get them to understand that this kind of translation was necessary?
Louise Villejo, MPH, MCHES:
Well, like I said, we had that little group. And they were actually doing the translations. And so looking back on it now, that was not their educational background. Like Language Assistance, they have certifications or graduate studies or whatever they have that that’s their profession. And these other folks, it was just probably that they were bilingual.
Tacey Ann Rosolowski, PhD:
I’m going to excuse myself just for a sec. Let me pause the recorder for a moment.
Louise Villejo, MPH, MCHES:
Sure.
Recommended Citation
Villejo, Louise and Rosolowski, Tacey A. PhD, "Chapter 11: Patient Education --Developing Programs by Involving Patients; CancerWise" (2015). Interview Chapters. 1526.
https://openworks.mdanderson.org/mchv_interviewchapters/1526
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