What does it mean to be your own best health advocate? It is The knowledge, ability, and confidence to find and evaluate information about your own health.
The Patient & Family Library in the University Hospital lobby near the Information Desk, is a good place to find easy-to-understand health information.
Listen as Lydia Witman, MLIS discusses ways to help you understand your health information and be an informed patient.
Learn more about the UVA Patient and Family Library
Selected Podcast
Understanding Health Information and Terminology
Featured Speaker:
Lydia Witman, MLIS
Lydia Witman, MLIS is the manager in the Patient and Family Library at UVA Medical Center. Transcription:
Melanie Cole (Host): What does it mean to be your own best health advocate--information literate as it were? It’s the knowledge, ability and confidence to find and evaluate information about your own health. My guest today is Lydia Witman. She’s the manager of the Patient and Family Library at UVA Medical Center. Welcome to the show, Lydia. How important, in your opinion, is it to be your own best health advocate and to be information literate when it comes to your disease?
Lydia Witman (Guest): I think it’s probably the most important quality that we can have when we are trying to either prevent illness or manage an illness that has already occurred or a situation that has already occurred. Ideally, we can educate ourselves enough to prevent anything from going wrong.
Melanie: Well, I think so. Okay, so there’s information about prevention--childhood obesity or heart disease or lung cancer or any of these things. There’s information on prevention. And then, if you do come up with a disease, then there’s information about that particular situation and then following treatment. So how does a patient follow that, sort of, timeline of information from prevention to possible treatment?
Lydia: Well, in the context of the hospital library, the medical center library where I work--and we often see families and patients in the treatment phase, and a lot of information questions really come up in the treatment phase; or, maybe somebody is doing research because they think they might have something or they’ve just received a diagnosis, they haven’t started any treatment yet but they’re curious what some of the treatments might be. Every day we use a wonderful resource called “www.medlineplus.gov”. It’s from the National Library of Medicine, and it’s freely available on the internet to anybody who has the internet. One thing you can see, if you click on a topic--maybe it’s heart failure or diabetes--you can see that each topic is arranged by symptoms, diagnosis, treatment, outcomes, prognosis, what they expect might happen; and then, they also, if you go to the National Library of Medicine site, have a little bit about research. Maybe, someone has tried all of the regular treatments and they really need to try something cutting edge that’s being researched right now, they could possibly be eligible for a clinical trial. Those will be listed there, too. So, you’re right. At all stages of the process, there’s wonderful information available. There’s also bad information available out there especially on the internet, and even some books. So, in the library, we really steer people toward current and reliable information that’s written in a way they can understand because medical information can get to be like a foreign language very quickly.
Melanie: Well, it certainly can. I agree with you about Medline Plus and also the National Institutes of Library because the National Health Library, I use that when I research these shows, and so I can tell the listeners that these are very credible places to get information on research and such. So, how can you help them to be that good advocate and find these sites with your resources at the Patient and Family Library?
Lydia: Well, I really think of it as, you know, people don’t know what they don’t know. It’s just a natural state. I’m not aware that I don’t know something. I love showing people--I and the other librarians who work here--love showing people, look you can get this resource anywhere there’s the internet. Now, we still have patients and families who aren’t comfortable using that, and so we do maintain a small print collection in the library. It’s not the most current--we like the internet because it’s where things can get updated right away. If a study changes something the government changes a recommendation, you can't go an update a book on the shelf that’s already on the shelf. But, we help people in whatever way they feel most comfortable. Sometimes, we are using the computer for them, finding something, and printing it out so that patients and families have something in print that they feel comfortable using, even though we have used the computer to get the information.
Melanie: Another thing I’d like to ask you about, Lydia, is children because sometimes especially if a child or the parent is going through a disease process and treatment, it’s very scary for children. Having them look at some of this information can be quite overwhelming. So, what do you do for children, and showing them things that are maybe age appropriate about whatever disease or condition they’re there to research?
Lydia: That’s an excellent question and we do have a children’s hospital here at UVA, so we have many pediatric patients, even though it’s smaller than the number of adult patients we have here. I think the child life department in the children’s hospital really does an excellent job. Their focused 100% on pediatrics. They have all kinds of resources, you know, written specifically--or they also have iPads. You know, the kids--it’s actually based on good research where if you can distract a child maybe during an MRI or another procedure that they’ll have better results because they remain more calm if they’re watching a peaceful video or something on the iPad. They have child specific and family and parent specific resources on our children’s hospital floor here. In the Patient and Family Library, we do maintain a small collection of books for children and some of them are very general like, “What is going to happen when I have my surgery.” Or, “I've just lost a sibling.” Or “My brother died,” or something like that. We see lot of siblings actually with the children in the main area because where we are located is the main area of the lobby in the hospital. I find that sometimes the siblings have these questions. I helped a tiny young lady the other day. Her mom was in surgery, and the grandmother had brought the young girl in while they were waiting, while the mother was in surgery. I was chatting with the little one and then she ended up going towards this book about “what’s going to happen when I have surgery”. And I realized that when I was reading through it with her that, even though the book was written as if the child were having surgery, she probably was having questions answered about what’s happening to mommy right now. So, we try to support not only pediatric patients but siblings and children of patients and families.
Melanie: I think that that is just lovely and so important became when families are involved, and the studies are showing more and more, that when families are involved as that support system for the disease, the person, the loved one that’s going through that, that better outcomes can result.
Lydia: Absolutely.
Melanie: So, I think education and information is important. So, Lydia, wrap it up for us with your best advice about being your own best health advocate, understanding your disease process, the treatments available and out there, and then give us the hours and your location.
Lydia: I think it really starts with a conversation with your doctor or whoever is taking care of you medically. Health information is a supplement to the actual medical care that you are receiving and that’s a relationship that really needs to be a good one for your to get what you truly need to get better or to prevent illness. So, I'm always reminding people, you know, “Have you asked your doctor about this, or you know, maybe it’s a conversation you want to have next time you go to the doctor.” And I have sheets that can help people jot down their questions. So, they sometimes think of questions while they’re in the library that they need to take back to their care team because we can't answer clinical questions. We can't give medical advice in the library but we want to encourage that conversation and help patients and families come to that conversation prepared with good information. If they can say to their doctor, “I was on the National Library’s medicine site or I was in the library, and the librarian helped me see the blah, blah, blah”, they can say, “Is this treatment an option for me?” or, “Is this what’s going to happen?” The doctors and other care team members will respond positively when you say you were in the library or you were at the library website. So, we are trying to help empower you to have a good conversation and get the care that you need. We see twice as my family members as patients themselves and I think this is really to your point about when there’s a team involved, not only the clinical team but your personal family and friends to support you, the more the merrier. The more informed, the more information, the better it is for you. You might not be feeling well enough to educate yourself on something, but then you may have a spouse who is going to be on top of that for you. I know that from my own experience as well. All of us are patients and families of patients so we definitely take that into consideration when we’re helping people in their time of need here. People are onsite at UVA, and we are located right in the main lobby of the hospital which is also attached to many of the primary care center clinics. We serve, not just hospitalized patients but also outpatients, clinics, and day surgeries and things like that. We’re open Monday through Friday, 10 am to 4 pm. People can also access our resources online. We have a collection of excellent health information resources online at our website. Of course they can call us and email us as well.
Melanie: And that website is www.hsl.virginia.edu/pfl. And you can find out more information about the patient and family library at the UVA Medical Center. Such great information, Lydia. Thank you so much for being with us today. It’s important that people understand to be their own best health advocate and that their providers do appreciate when they are an informed patient. So, thank you so much for the great information. You’re listening to UVA Health Systems Radio. And for more information you can go to www.uvahealth.com. That’s www.uvahealth.com. This is Melanie Cole. Thanks so much for listening.
Melanie Cole (Host): What does it mean to be your own best health advocate--information literate as it were? It’s the knowledge, ability and confidence to find and evaluate information about your own health. My guest today is Lydia Witman. She’s the manager of the Patient and Family Library at UVA Medical Center. Welcome to the show, Lydia. How important, in your opinion, is it to be your own best health advocate and to be information literate when it comes to your disease?
Lydia Witman (Guest): I think it’s probably the most important quality that we can have when we are trying to either prevent illness or manage an illness that has already occurred or a situation that has already occurred. Ideally, we can educate ourselves enough to prevent anything from going wrong.
Melanie: Well, I think so. Okay, so there’s information about prevention--childhood obesity or heart disease or lung cancer or any of these things. There’s information on prevention. And then, if you do come up with a disease, then there’s information about that particular situation and then following treatment. So how does a patient follow that, sort of, timeline of information from prevention to possible treatment?
Lydia: Well, in the context of the hospital library, the medical center library where I work--and we often see families and patients in the treatment phase, and a lot of information questions really come up in the treatment phase; or, maybe somebody is doing research because they think they might have something or they’ve just received a diagnosis, they haven’t started any treatment yet but they’re curious what some of the treatments might be. Every day we use a wonderful resource called “www.medlineplus.gov”. It’s from the National Library of Medicine, and it’s freely available on the internet to anybody who has the internet. One thing you can see, if you click on a topic--maybe it’s heart failure or diabetes--you can see that each topic is arranged by symptoms, diagnosis, treatment, outcomes, prognosis, what they expect might happen; and then, they also, if you go to the National Library of Medicine site, have a little bit about research. Maybe, someone has tried all of the regular treatments and they really need to try something cutting edge that’s being researched right now, they could possibly be eligible for a clinical trial. Those will be listed there, too. So, you’re right. At all stages of the process, there’s wonderful information available. There’s also bad information available out there especially on the internet, and even some books. So, in the library, we really steer people toward current and reliable information that’s written in a way they can understand because medical information can get to be like a foreign language very quickly.
Melanie: Well, it certainly can. I agree with you about Medline Plus and also the National Institutes of Library because the National Health Library, I use that when I research these shows, and so I can tell the listeners that these are very credible places to get information on research and such. So, how can you help them to be that good advocate and find these sites with your resources at the Patient and Family Library?
Lydia: Well, I really think of it as, you know, people don’t know what they don’t know. It’s just a natural state. I’m not aware that I don’t know something. I love showing people--I and the other librarians who work here--love showing people, look you can get this resource anywhere there’s the internet. Now, we still have patients and families who aren’t comfortable using that, and so we do maintain a small print collection in the library. It’s not the most current--we like the internet because it’s where things can get updated right away. If a study changes something the government changes a recommendation, you can't go an update a book on the shelf that’s already on the shelf. But, we help people in whatever way they feel most comfortable. Sometimes, we are using the computer for them, finding something, and printing it out so that patients and families have something in print that they feel comfortable using, even though we have used the computer to get the information.
Melanie: Another thing I’d like to ask you about, Lydia, is children because sometimes especially if a child or the parent is going through a disease process and treatment, it’s very scary for children. Having them look at some of this information can be quite overwhelming. So, what do you do for children, and showing them things that are maybe age appropriate about whatever disease or condition they’re there to research?
Lydia: That’s an excellent question and we do have a children’s hospital here at UVA, so we have many pediatric patients, even though it’s smaller than the number of adult patients we have here. I think the child life department in the children’s hospital really does an excellent job. Their focused 100% on pediatrics. They have all kinds of resources, you know, written specifically--or they also have iPads. You know, the kids--it’s actually based on good research where if you can distract a child maybe during an MRI or another procedure that they’ll have better results because they remain more calm if they’re watching a peaceful video or something on the iPad. They have child specific and family and parent specific resources on our children’s hospital floor here. In the Patient and Family Library, we do maintain a small collection of books for children and some of them are very general like, “What is going to happen when I have my surgery.” Or, “I've just lost a sibling.” Or “My brother died,” or something like that. We see lot of siblings actually with the children in the main area because where we are located is the main area of the lobby in the hospital. I find that sometimes the siblings have these questions. I helped a tiny young lady the other day. Her mom was in surgery, and the grandmother had brought the young girl in while they were waiting, while the mother was in surgery. I was chatting with the little one and then she ended up going towards this book about “what’s going to happen when I have surgery”. And I realized that when I was reading through it with her that, even though the book was written as if the child were having surgery, she probably was having questions answered about what’s happening to mommy right now. So, we try to support not only pediatric patients but siblings and children of patients and families.
Melanie: I think that that is just lovely and so important became when families are involved, and the studies are showing more and more, that when families are involved as that support system for the disease, the person, the loved one that’s going through that, that better outcomes can result.
Lydia: Absolutely.
Melanie: So, I think education and information is important. So, Lydia, wrap it up for us with your best advice about being your own best health advocate, understanding your disease process, the treatments available and out there, and then give us the hours and your location.
Lydia: I think it really starts with a conversation with your doctor or whoever is taking care of you medically. Health information is a supplement to the actual medical care that you are receiving and that’s a relationship that really needs to be a good one for your to get what you truly need to get better or to prevent illness. So, I'm always reminding people, you know, “Have you asked your doctor about this, or you know, maybe it’s a conversation you want to have next time you go to the doctor.” And I have sheets that can help people jot down their questions. So, they sometimes think of questions while they’re in the library that they need to take back to their care team because we can't answer clinical questions. We can't give medical advice in the library but we want to encourage that conversation and help patients and families come to that conversation prepared with good information. If they can say to their doctor, “I was on the National Library’s medicine site or I was in the library, and the librarian helped me see the blah, blah, blah”, they can say, “Is this treatment an option for me?” or, “Is this what’s going to happen?” The doctors and other care team members will respond positively when you say you were in the library or you were at the library website. So, we are trying to help empower you to have a good conversation and get the care that you need. We see twice as my family members as patients themselves and I think this is really to your point about when there’s a team involved, not only the clinical team but your personal family and friends to support you, the more the merrier. The more informed, the more information, the better it is for you. You might not be feeling well enough to educate yourself on something, but then you may have a spouse who is going to be on top of that for you. I know that from my own experience as well. All of us are patients and families of patients so we definitely take that into consideration when we’re helping people in their time of need here. People are onsite at UVA, and we are located right in the main lobby of the hospital which is also attached to many of the primary care center clinics. We serve, not just hospitalized patients but also outpatients, clinics, and day surgeries and things like that. We’re open Monday through Friday, 10 am to 4 pm. People can also access our resources online. We have a collection of excellent health information resources online at our website. Of course they can call us and email us as well.
Melanie: And that website is www.hsl.virginia.edu/pfl. And you can find out more information about the patient and family library at the UVA Medical Center. Such great information, Lydia. Thank you so much for being with us today. It’s important that people understand to be their own best health advocate and that their providers do appreciate when they are an informed patient. So, thank you so much for the great information. You’re listening to UVA Health Systems Radio. And for more information you can go to www.uvahealth.com. That’s www.uvahealth.com. This is Melanie Cole. Thanks so much for listening.