Patient Education – Filling the Information Gaps for Cancer Patients and Caregivers

MD Anderson Cancer Center
Date: 2/21/11

 

>>Anderson Cancer Center. Cancer Newsline helps you stay current with the news on cancer research, diagnosis, treatment, and prevention providing the latest information on reducing your family's cancer risk. I'm your host, Lisa Garvin. Today, our guest is the Program Manager of Communications for M. D. Anderson's Patient Education Office Julie Bradford and we're going to be talking about the role of patient education both at M. D. Anderson and in general. Julie, patient education is a big broad topic. Within the mission of M. D. Anderson, what does that mean?

Julie Bradford: That's a good question, because it is a broad topic and our department primarily works with the clinical staff in the hospital to help provide the education so they can share that with our patients about their disease and their diagnosis and treatment. And so what Patient Education Office does is we do use a patient centered approach where we empower our patients to make informative choices by providing educational resources from the time of diagnosis through follow up care. We also identify employing and impart the best evidence based practices in patient education. We base that on support from studies and clinical evidence and we recommend patient education strategies that are proven to be the most effective to help patients and we also remain committed to the excellence through accuracy, responsiveness, and consistency in our messages.

Lisa Garvin: And I know there is a big gap between... obviously cancer patients have to take in a lot of information throughout their cancer journey and I know it's not always easy for the health treatment team to say okay this is what you need to know about your treatment and so forth so you kind of fill a gap there.

Julie Bradford: We do and based on the information that patients need and the time that they're seeking that information we provide it, the information, in chunks so it's as needed information at the time that you're requesting it. So if it's information about, Okay I just was diagnosed with breast cancer, what does that mean? We provide that. If you want to know information about the treatment, we have a team of specialists that can provide that information and we also have the Learning Center Library, so if a patient wants to search information, they can stop by our library and meet with either a Health Education Specialist or a Medical Librarian that will research that information. We can get really specific information for you or very general whatever is best for you at that time.

Lisa Garvin: And you also have what you call Pathfinders so if people have a certain diagnosis, you give them a list of resources. Tell us what a Pathfinder is.

Julie Bradford: Sure. A pathfinder is something that is available in the Learning Center and it's a document that will list very popular websites and journals and different resources that can provide information to patients. So you don't have to walk into the library and figure out where to get the information. We have a list of specific resources that are credible that you can go to and get the information that you're looking for.

Lisa Garvin: And you have a massive database of documents, patient education online and that covers the gamut, I mean, people can actually learn how to administer drugs and how to change their catheter and so on and so forth.

Julie Bradford: Exactly, we have over three thousand documents, information and medication sheets on patient education online and this is information that is medically approved by our clinicians and the staff are able to access this database and provide this information to our patients and we can also attach these documents in your My M. D. Anderson Account, so as a patient you can go into you're My M. D. Anderson and see the documents that your physician or your nurse gave to you during your appointment and you can look at it at a later time.

Lisa Garvin: You have mentioned before we started the interview that there are some like Mayo Clinic and others that do have a wealth of patient education information, but do you find is that true across most comprehensive cancer centers, or are we kind of different in that respect?

Julie Bradford: I think we're unique and that we have the specific information that is approved by our physicians and our nurses that are available on the website so you can go to the mdanderson.org website and when you're looking at different diagnoses, there's information available for you on the website so if you want to learn more about your specific cancer you can do so.

Lisa Garvin: And as far as new patients, you also provide help with navigating the campus.

Julie Bradford: Hmm, we offer a new patient orientation class and it's available during the week in both the main building and the main campus so you can go to either class and the class talks about different amenities that are available here at the hospital, and M. D. Anderson has a lot, and we also talk about how to find your way around the campus so we describe the way finding system here in the campus, how do you find a room number, how do you find a clinic, and all the different offerings that are available for that.

Lisa Garvin: And you also have videos that are available, some are available online, but do you also have them available for inpatients as well?

Julie Bradford: We do, so we have lots and lots of patient education videos. If you're an inpatient you can watch it on the TV in your inpatient room through, what we call, video on demand and you can watch your videos 24 hours a day so whenever you're, you know, if you're up at night and you want to watch a video you can or during the day, we also have videos for patients to watch on the website on I-tunes, and also, there's a few on You Tube, but if you go to the website you'll find a variety of the videos. You also can watch videos on My M. D. Anderson, there's a tab on there called the video library so you can watch multiple videos through My M. D. Anderson and also you can go to the learning center and we have additional videos available in the learning center that you can watch in the library.

Lisa Garvin: And you guys are kind of operating in the background in disseminating this information, but do you ever get any feedback from patients about, Wow! I mean these documents really helped me! Do you ever get that vindication?

Julie Bradford: We do sometimes, we do have the class that we teach for new patient orientation class so that's a wonderful feedback from patients about their journey and how the information has helped them make the decisions that are best for them. The learning center staff they get lots and lots of feedback from patients because they're meeting with the patients face-to-face and answering their specific questions and so we get lots of kudos for how supportive and helpful the staff has been, how the information has helped them make decisions and then we also evaluate a lot of our publications and so we receive written comments from patients about how the chemotherapy guide really helped me understand my side effects or how your service guide helped me understand about an amenity that I needed, you know, maybe not the first day, but maybe like three months out I needed it so. We do get, we do get those kudos.

Lisa Garvin: How important is it to standardize patient education information?

Julie Bradford: It's very important to standardize it because you want to have the same information being shared across the board. You don't want to have one document telling the patient to do x, y, and z and another document to say something different. We need to have our messages be the same because cancer is difficult enough. We need to be able to provide information that is easy to understand and accurate across the board.

Lisa Garvin: As far as patients who may not come to M. D. Anderson and perhaps the center that they're being treated at doesn't have this wealth of information, what can they do to find that information? Is there anything they can do?

Julie Bradford: Well the website is where everybody goes nowadays right? So I would say, you know, search online for credible resources, the Pathfinders that we mentioned before, they're also not only in the learning center but they're on our website so you can go online and look up the Pathfinders, you can search on the M. D. Anderson website, go to the Learning Center and on the right hand side of the page it has all the Pathfinders so if you have sarcoma or thoracic cancer, for instance, you can look on that document and it will tell you what websites we recommend that are credible. They may not be M. D. Anderson documents or M. D. Anderson websites, but you can go to other resources that we find credible and then of course, NCI National Cancer Institute is a really wonderful resource too.

Lisa Garvin: In the years that I've been here, I've seen patient education take an ever larger role, where do you see your office going in the future as far as disseminating and, and creating new patient education resources?

Julie Bradford: Well that's a good question too. I think that with the way people are seeking information now it's becoming more and more interactive and so one of the things that we've been working on lately, and I think it's going to grow in the future is E-learning so, for instance, we talked about the new patient orientation class, it's a face-to-face class, but we now also have an online learning module so you can go into the learning center and sit in front of the computer and get the information tailored how you want to view it, so it's kind of like a choose your own adventure. If you want to learn about amenities, you can check out that section, if you want to learn about parking, you can check out that section, if you want to know about what to expect in your first week, you can check out that section, and our goal is to, you know, put that on the website in the future but we're, you know, growing and developing those resources. More social media is also something in the future. We do have a Facebook page for patient education and we push out information about the classes and events that are happening here at the hospital, but we're also attuned to our patients that are not here so if you're in another state or not in Houston, you can get resources such as podcasts like this or information from other resources throughout M. D. Anderson because while we are the Patient Education Office, so many departments touch on education and we want to share all of the information to our patients.

Lisa Garvin: So in closing Julie, is there any other message you'd like to give to our listeners today about the importance of patient education?

Julie Bradford: I think the main message that I'd like to share is that it's really important as a patient to be your own advocate. Feel free to ask lots and lots and lots of questions, it's definitely your right to ask those questions until you feel comfortable enough with the information to make a decision that's best for you. And we have resources to help you with seeking that information so feel free to go to the learning center and seek information from them, ask questions of your doctors and nurses, and, you know, go to My M. D. Anderson and look at those patient education documents so you can know more about your treatment and diagnosis, and you know, we're here to help so if you have any questions feel free to speak up and ask so that you can make the best decision for you and your family.

Lisa Garvin: As far as patients who aren't M. D. Anderson, what can they do with their doctors, if they're not at M. D. Anderson, should they ask for printed information, because, you know, often you're told write down or take a tape recorder, but sometimes that may not always fill the bill, should patients be pretty proactive in asking for printed documented patient education information regarding their treatment?

Julie Bradford: Sure, I think you need to do whatever is best for you to retain the information so if that's having one person ask questions and another person writing down the answers, if it's asking, you know, if I can tape-record this appointment, and be sure to ask that question, or if it's, you know, asking for printed documentation I think that's completely in your right because it's your healthcare and you need to make the best decision for yourself.

Lisa Garvin: So in closing, patients need to be proactive and take an active role in their treatment.

Julie Bradford: Absolutely.

Lisa Garvin: Great! Thank you for being with us today.

Julie Bradford: Thank you.

Lisa Garvin: If you have questions about anything you've heard today on Cancer Newsline, contact Ask M. D. Anderson at 1877-MDA-6789 or online at www.mdanderson.org/ask. Thank you for listening to this episode of Cancer Newsline. Tune in next week for the next podcast in our series.

[ Music ]