Resource center is designed to help patients, families

[00:00:00] Host Amber Smith: Upstate Medical University in Syracuse, New York invites you to be "The Informed Patient" with a podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith. One of the features of the Upstate Cancer Center is a family resource center. Today we'll learn about what that is. My guest is Sarah Lawler. She's a clinical outreach librarian at Upstate's Health Sciences Library. Welcome to "The Informed Patient," Sarah Lawler.

[00:00:29] Librarian Sarah Lawler: Hi. Thank you so much for having me.

[00:00:32] Host Amber Smith: So tell us about the Family Resource Center.

[00:00:35] Librarian Sarah Lawler: So the Family Resource Center is the library space in the Upstate Cancer Center. It is located on the first floor of the cancer center. So as you face the information desk on the first floor, it is directly to your right behind the stairs. And also the fantastic staff at the front desk can also direct you as well, if that is helpful.

So the gist of the Family Resource Center is, it's a room that has a few computers in it, which can be very helpful if you need to look something up, if you are not able to be in the room with your loved one during their appointment, you can Zoom into the meeting using one of our computers.

We also have a book collection that we're very proud of, all types of information for people who have cancer, for caregivers, for loved ones, and that is our book collection. And we also have a printer in there and various different brochures of all the different services the cancer center offers, as well as services in our local community for cancer patients and cancer survivors.

[00:01:49] Host Amber Smith: So it sounds like it's kind of aimed at family members or friends of patients that are either coming, I guess mostly for outpatient care or a medical appointment, or it does it also apply to someone who's hospitalized?

[00:02:04] Librarian Sarah Lawler: It applies to anyone who has cancer, who's receiving treatment, anyone who loves that person, family members, friends, caregivers. And yes, absolutely people are hospitalized with cancer. They could absolutely find information in the Family Resource Center that would hopefully be useful.

[00:02:23] Host Amber Smith: Now, is there any way to assist someone who can't be there in person who can't come into the Family Resource Center? Can they reach your services online or by phone?

[00:02:35] Librarian Sarah Lawler: Absolutely. They can give me a call, and we can chat about their needs, and they can also email me. My phone number is (315) 464-7192. And my email is Lawler Sa at upstate dot edu, and that is spelled L A W L E R S A @ Upstate.edu.Most of the request I receive are actually, via email or via phone.

[00:03:07] Host Amber Smith: Well, let's talk about what resources are available in the center. Is it a lending library like a public library would be?

[00:03:15] Librarian Sarah Lawler: So interestingly, it is not a lending library. Because there isn't a staff member in the space the entire time that the center is open -- I am in there from 10 to 11 on Thursdays, but the rest of the time it's unstaffed -- so we don't have a staff member to check in and out books. And there were also infection control concerns because we want to keep our patients as healthy as possible an incredibly generous grant from the cancer center to purchase brand new books and give them out for free to our patients and their family members and their friends.

[00:03:56] Host Amber Smith: So what type of books are these?

[00:03:59] Librarian Sarah Lawler: They are all types. I would say the most common type of book that we have in the space are cookbooks. So these are cookbooks that are geared toward people who have cancer and also cooking for the entire family or your loved ones In a way that helps out and hopefully helps lessen some of those common side effects from cancer treatment, while still being good family options that hopefully everyone in the family would enjoy. So cookbooks are a huge one.

We also have informational texts on cancer on, caregiver info, things like that. We also have fiction in the Family Resource Center that isn't cancer related. We know that people sometimes get inundated with information. You know, when you have cancer, it's all this information, cancer, cancer, cancer, and sometimes you need a little break. So we definitely wanna provide resources for that as well. And there are also books in there that are geared toward children who have cancer as well.

[00:05:05] Host Amber Smith: Are you able to help people who want to do their own research? Is that the request that you get?

[00:05:13] Librarian Sarah Lawler: Absolutely. So we have a couple of options.

Some people really prefer to do their own internet searching, and that is great. When that's the case, I sit down with them, either virtually, in person, over the phone, whatever works best for them, and I teach them some tips, some strategies for how to find quality health information on the internet and to be reasonably certain that the information that they're finding is quality.

[00:05:44] Host Amber Smith: Do you ever find yourself searching through medical journals?

[00:05:48] Librarian Sarah Lawler: Absolutely. So some people are interested in the cutting edge research that is being done, and if that's the case, I do search those medical journal articles and send them to them. The thing that's a little bit tricky about those is that they are written for medical professionals, so doctors, nurses, people who have degrees and experience in the medical field. So they include a lot of jargon, a lot of words that people who don't have those degrees may not know, and it might take them a longer to get through the articles. So usually I default to the information that is written specifically for patients and family members. But it is certainly an option if someone is interested in that.

[00:06:34] Host Amber Smith: Well, I'm interested in your background and how you trained to become a librarian working in an academic medical center.

[00:06:42] Librarian Sarah Lawler: So to become a librarian, you have to have a master's in information science, and so I got my master's at Syracuse University in 2013. And I actually started in public libraries. So the first five years that I was a librarian, I was a librarian at the Fayetteville Free Library in Fayetteville, New York. And I did similar things to what I'm doing now. It was a lot of outreach, it was a lot of instruction. But five years ago I transitioned, to being a medical librarian, which was a lot of the same things, because it was a lot of outreach, which is pretty similar, but it was a steep learning curve in terms of learning how to search databases, learning about medical information, learning the lingo, learning what different medical professionals do. So it was quite a big change. But I enjoy both roles for sure.

[00:07:39] Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith, and I'm talking with clinical outreach librarian Sarah Lawler about the Family Resource Center.

What types of requests do you most often get from patients or their families?

[00:07:55] Librarian Sarah Lawler: I would say most frequently they are looking for information on the type of cancer that they have, or their loved one has. Sometimes there's requests for side effects. Treatment options is a huge one. Frequently people want to know what treatments are available.

[00:08:13] Host Amber Smith: And so you can help them look for treatments or even, I imagine, clinical trials for treatments that are being developed, maybe?

[00:08:21] Librarian Sarah Lawler: Absolutely. Yeah. So if someone was interested in clinical trials, I could help them do a search to identify ones that would fit whatever parameters, whatever needs they had.

[00:08:33] Host Amber Smith: What's the most unusual request you've received?

[00:08:37] Librarian Sarah Lawler: This always makes me laugh because, I think through my experience being a librarian, both public librarian and medical librarian, people who ask questions, they frequently think that their question is really unusual and really strange. And that's never the case, quite frankly. We have heard it all. And most of the time what they're asking is a really common question. It's a need that a lot of people have. And so, I just really want to release the stigma around asking your librarian for help. They're not judging you. They're not thinking you're really strange. They are here to help you, and they want to help you.

[00:09:19] Host Amber Smith: Do you ever get requests that take a lot of time to fulfill?

[00:09:24] Librarian Sarah Lawler: It takes more time when someone is interested in medical journal articles just because the searching for that. It takes a little bit more time, but it's always worth it.

[00:09:37] Host Amber Smith: Do you have a favorite request that you think back to?

[00:09:41] Librarian Sarah Lawler: I would say my favorite type of request is when someone comes to me looking for, to help a loved one, a friend, a family friend, someone they know, who is going through cancer.

So frequently people will come to me and say, "my relative, my friend is going through a cancer treatment. I don't know how to help. I want to help them. I know they're overwhelmed. What should I do?" And I think it's really wonderful when someone wants to get resources for their friend. They want to be there for their friend, they want to help out. And usually the result of that kind of ask is me giving them some books, some book titles that they might take to their loved one and share with them.

And usually that's a great interaction because you can just tell that these people are very loving, very kind people who want to help.

[00:10:38] Host Amber Smith: And so you can help them pick the right sort of title, or the right sort of book, that would be helpful?

[00:10:44] Librarian Sarah Lawler: Absolutely. Yes. That's what I'm here for.

[00:10:48] Host Amber Smith: Well, before we wrap up, since I know you work with patients and families whose loved ones have cancer, what advice do you have for someone who's newly diagnosed?

[00:10:59] Librarian Sarah Lawler: I would say, while the cancer treatment process can be really intimidating -- it usually involves, meeting with a lot of different healthcare professionals, a lot of new things, a lot of, words and treatment options that you may not have heard before -- I would say don't be afraid to ask questions of your treatment team. I know that it can be intimidating, but they're absolutely there to help you, and a lot of them are really kind, really thoughtful individuals who want to help.

[00:11:34] Host Amber Smith: Are there resources that people can turn to other than the Family Resource Center? You know, if they get home from after their appointment and are thinking back on either notes they took or the conversation they had, and maybe there's a word that they don't understand, is there a resource that you recommend for learning different medical terms?

[00:11:55] Librarian Sarah Lawler: Yeah, so, there is a really great website put out by the National Library of Medicine. It's called medlineplus.gov. And that information on that website is, has information from the National Library of Medicine on a lot of different terms. A lot of different health related topics of all kinds, not just cancer. And that's good quality health information, generally. It's a website that I recommend to a lot of different people, and it does have links to information, other places on the internet. So they may link out to American Cancer Society, different government websites and organizations. And those links are vetted by librarians from the National Library of Medicine. Nothing is foolproof, but that's generally a really good resource.

[00:12:49] Host Amber Smith: That's really good to know. Well, Sarah Lawler, thank you so much for making time for this interview.

[00:12:55] Librarian Sarah Lawler: Thank you for having me.

[00:12:57] Host Amber Smith: My guest has been Sarah Lawler. She's a clinical outreach librarian at Upstate's Health Sciences Library. "The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe. Find our archive of previous episodes at upstate.edu/informed. This is your host, Amber Smith, thanking you for listening.