Care Partners Compass: Navigating CRC

Finding reliable medical information online
Elsa Lankford

Elsa 0:01
Welcome to Care Partners Compass Navigating CRC. My name is Elsa Lankford. I am the care partner to my incredible wife, Kristine, who has stage four colorectal cancer. As a disclaimer, this podcast and its content is for entertainment purposes only. The views and opinions expressed by any hosts or guests on this podcast are their own personal opinions. Reference to any specific product or entity does not constitute an endorsement or recommendation. This podcast does not contain medical or legal advice. Please consult your medical professional about any medical questions or concerns.

Elsa 0:48
One of the reasons that I'm doing this podcast is the obvious one to tell the story of one person who cares and loves somebody who has stage four colorectal cancer. To understand what care partnering can be like. But I also hope that I'm helping to translate this experience and vocabulary Both for people who are in cancer land, But also that people living outside of cancer land can communicate better If not communicate at all to people who are affected by cancer.

------ Being bombarded with information, not knowing if it's trustworthy ------ 1:29

Elsa 1:29
When you're in cancer land, you are continuously bombarded with information or you're searching for information. And it's really hard to know what you can trust there's a lot of people out there that maybe they mean well, but they're sending information that may not be necessarily true. It can be a real challenge, especially right after a diagnosis. And then add to that the information overload and not knowing what a good source of information is. I asked somebody from my university if she could join in on a conversation about trusting sources where to look for information. I've been at this for a couple of years and I learned a lot. on today's episode, I'm joined by Carrie Price. She is a medical librarian at Towson University. She's also worked at Hopkins, which is an NCI center in Baltimore and has had multiple family members affected by cancer.

------ Why medical librarians are awesome ------ 2:34

Elsa 2:34
Okay, So here here's my thing is I sadly do not know much about medical librarians. I know that librarians are awesome and therefore medical librarians are awesome just because it's under the umbrella. But I feel very uneducated about medical librarians.

Carrie 2:55
yeah. So everybody thinks librarians just work with books. I mean, I don't. I don't really work with books anymore. Thank God it's all digital now, I still work with books, but a lot of our work is research based. So we'll help researchers do literature reviews and look stuff up and submit and find the latest research. And they're the ones that get to make the decisions that change policy and patient care and decision making. But we're the ones hopefully behind the scenes helping them. You know, find this evidence, which is really important. So that's kind of how I would that's my elevator speech for medical librarianship.

------ Finding trustworthy and understandable information - Medline Plus and the NCI database ------ 3:31

Elsa 3:31
Very cool. Then you are the right person to ask these questions to. So right after diagnosis, I remember how overwhelming it was. And also really confusing because there are so many online sources and you just don't know what to trust. Do you have any suggestions on how to handle that?

Carrie 3:51
Yes. I think that's always a vulnerable time in the health journey. And we've all heard of Dr. Google and how when you look things up on Dr. Google, you're going to get information that's upsetting or misleading. I think it's good to remember that there are reputable sources out there. You just have to know to look for them. One of my favorites is Medline Plus from the National Library of Medicine. It's got health topics and drug information and supplement information. It's got a medical encyclopedia and information about medical tests and genetics. And another one, another resource that I really like is from the National Cancer Institute. They have a big database of information on different cancer types, and each of those has a really big entry on more information. You can find out from an overview to the treatment to causes and prevention, screening statistics and caregiver support, which I think is important, and also links out to research for the specific type of cancer. So those are my two favorites, Medline Plus and the National Cancer Institute, and they're from the U.S. National Institutes of Health.

------ MedLine Plus can be helpful to look up supplements too ------ 5:04

Carrie 5:04
So I wanted to say one more thing about Medline Plus, which is when you look up drugs or supplements, you're always linked to references, but especially when you look up supplements. So let's say you were thinking of taking a new supplement which aren't always regulated by the FDA. You can always see evidence. It'll say, Is there evidence for this? And you'll be able to see if there's been trials conducted and if they were and if they showed any efficacy or not. So that's one of my favorite things about Medline plus is being able to look up herbs and supplements and even drugs and being linked to references that are reputable and finding real evidence that usually I can make sense of.

------ How to make Google be a little more predictable and trustworthy with its results ------ 5:42

Elsa 5:42
I remember in the beginning after my wife's diagnosis that I had so much to learn, but I knew that Google was going to hold some problems for me.

Carrie 5:54
Yes. Sometimes when I do a Google search and I want to limit it to sources like these, like from the NIH, I will limit it to site dot gov. And this is something I even teach my students. So you can do a keyword search in Google and then type site colon dot gov and you will be limited to the government sites which are usually going to at least for health information, fall within the CDC and NIH and Medline plus. So that's one way to kind of eliminate the junk that Google will give you when you search.

Elsa 6:27
Oh, that that is that's a hot tip. I don't I don't

Carrie 6:32
Yeah,

Elsa 6:32
think about doing that. That's awesome.

Carrie 6:35
it's a timesaver.

Elsa 6:37
Yeah, definitely.

------ Getting somebody more science-oriented onto your support team can be very helpful ------ 6:39

Elsa 6:39
So people can try to find information that's maybe helpful, but a little less technical. just did a podcast episode about the importance of having a medical team and a support team. Do you think that having somebody with like more of a science background might be helpful for being on a support team?

Carrie 6:59
Absolutely. Because they can help you take that technical language that you're not familiar with and maybe put it into a way that you can understand in science. I think they call it a plain language summary or consumer health information. And of course, as time goes on, you get more and more familiar with the terminology. You can always look it up and become familiar with it yourself. But it's really, really great to have an advocate either in the form of a family member or a provider who can sort of walk you through this encyclopedia of terms that all of a sudden you're faced with and have to figure out what it means. And cancer's really complicated, of course, so you're left with a lot of education there, you know, what does all this mean? I think it would be helpful to have someone who can help you out there.

Elsa 7:52
Yes, there is definitely a steep learning curve and I'm still on the learning curve. You know, two years later,

------ PubMed has a lot of articles, here's some tips on narrowing down the results ------ 8:03

Elsa 8:03
so for Pub Med, a lot of times I'll see people sharing articles from Pub Med or I end up finding articles on pub med. Can you tell me anything more about what that site means? Is everything there trustworthy in terms of medical information?

Carrie 8:23
PubMed, so I talked about Medline Plus and the National Cancer Institute. Those are really meant for consumers. You know, the the average patient person without much medical knowledge. But PubMed is for the researcher and I love PubMed. I'm a medical librarian by trade. But even looking at the research and reading it all day every day doesn't necessarily mean I understand it. So PubMed is a big research database from the National Library of Medicine and it's got 36 million records in it. So when you search in PubMed, you have 36 million records to deal with and you're probably going to get more than you know what to do with when you search. So some of the things I could advise would be, I think especially when you're a cancer caregiver or you're looking for cancer information, you can limit to clinical trials because that's probably something you'd want to see. You can limit to systematic reviews and meta analysis in evidence based practice. Those are usually considered a high level of evidence because they take the results of multiple trials and studies and synthesize them into one. main recommendation to like, look at the effectiveness of a treatment, for example. But when you do look at this information, yeah, it can be difficult to understand. So here's where I would say if you can get access to the article, print it out, take it to your doctor, try to get their opinion on it. But also you can always look at the methods which will tell you what they did and how they did it and the results which will tell you what they found. And usually there's a conclusion in there that'll say what they what they felt about that treatment. So that's usually how I end up reading scientific articles is looking at the methods, the results, and the conclusion to really get an idea of what the takeaway is for that article. It can be really hard to make sense of. I understand it's it's challenging because there's a lot of statistics and odds ratios and hazard ratios and, you know, what does that even mean? I don't know.

Elsa 10:31
Yeah. I starting to read this scientific articles made me really wish that back in college, I had

10:41
retained more information for my stats classes

10:45
class. I shouldn't make

Carrie 10:46
Yeah.

Elsa 10:46
it seem like I did more than what I did. One and I, I will typically jump to the conclusion a lot of the times. I mean, I'll go back and read the whole thing, but that seems to me like where they sometimes the abstract part doesn't quite encapsulate everything. So the conclusion is where they give it all away.

------ How to be more sure about your article from PubMed ------ 11:10

Carrie 11:10
well, and also to to talk about PubMed a little bit more. So PubMed having the 36 million records, there's major components of PubMed, one of which is Medline. And the journals in Medline go through a more rigorous vetting process and would be considered maybe a little bit higher quality in terms of being a good journal. You know, that's that's a fraught topic in anyway when we're talking about research metrics. And then the other part of PubMed is PMC PubMed Central, which is an open access repository. And there's a lot of good journals in PMC too, but there are a lot of journals or articles that get deposited through public access policies. Their vetting process isn't as rigorous. the takeaway is that you still have to be wary of what you find on PubMed just because it's on PubMed doesn't mean it's the end all be all. It's not definitive. You still have to use critical thinking skills you know, those critical thinking skills, they're the same as what we tell students in college, which is who wrote it and what are their credentials, what's their expertise? Are they a cancer doctor or are they like, a chiropractor? I would feel differently about that versus when when was it written? Because cancer treatment especially has changed a lot in the past 20 years. And so if it's from 1999, it's probably going to have less relevance to you right now. So, yeah, you want to look at who wrote it when it was written. if it's a website, you'll want to see when it was last updated. That's another thing that a lot of these good reputable sources should be putting on their website, which is when it was last updated. You might want to see where the doctor's from and what their experience is. So there's different ways to sort of judge what you find on PubMed. I wish it were easier.

Elsa 13:02
that's very helpful. One,

Carrie 13:04
Yeah.

Elsa 13:04
one

------ Google Alerts can be helpful, but it can be more helpful if an article has been vetted and isn't sensationalist ------ 13:04

Elsa 13:04
thing I notice I started, I mean, I've been doing this now for, you know, a couple of years and I just recently, maybe the last six months started with Google Alerts for, certain topics or drugs that seem promising or trials that seem promising.

Carrie 13:22
Mm

Elsa 13:23
So I end up with a variety of sources. Um, and some of them are literally just the press release

Carrie 13:36
Oh, yeah.

Elsa 13:37
But what I do appreciate sometimes they'll say that it's been either vetted or checked by they'll list the doctor which I really appreciate. I make sure to look for that especially when they're combining like information from multiple papers together that it's gone through somebody that really, is an expert.

Carrie 13:56
Right, right, kind of along the same vein as

------ When the headline is too good to be true ------ 14:00

Carrie 14:00
those are, those are meant to be health summaries less sensationalist, but unfortunately we're stuck with a lot of sensationalist health news too. Right. Which can be hard to make sense of. And I think it's hard for health journalists to because they don't know is this the next big thing or, is it going to fizzle out and not be very important in a couple of years? So I do think you have to look at these. Any headlines coming out with with a grain of salt

14:29
until more research is done, which always takes time.

Elsa 14:32
That is I think one of the most frustrating things for me there was a drug dostarlimab for

Carrie 14:39
Mm

Elsa 14:40
colorectal

Carrie 14:40
hmm.

Elsa 14:40
cancer, an immunotherapy drug that was found to have very good results in a trial for a certain segment of rectal cancer that has microsatellite instability, which is maybe 15, 10 to 15% with that kind of lower stage cancer. but the headlines were, you know, drug makes cancer melt away or, you know, that might have been from a different thing. and it was all over when I see something in the New York Times, I kind of expect it to be a good source of information that's not sensationalizing it. And yet they were. and that gets everybody so excited.

Carrie 15:18
Right. It gets readers for their platform.

Elsa 15:21
Yes, it

Carrie 15:22
Yeah.

Elsa 15:22
does.

Carrie 15:22
You have to think about their motives. And it's not always malicious,

Elsa 15:28
Yeah,

Carrie 15:28
but still, Yeah, it can be tricky to navigate.

------ FDA drug approval database ------ 15:34

Carrie 15:34
When you were looking at drugs, had you ever checked out the FDA? They have a drug approval database with a lot of different information, which looks like it can be helpful for the consumer.

Elsa 15:48
Oh, I'll have to check that out, I, I have a feeling that I've gotten to a million different things, and yet

15:56
I haven't bookmarked nearly everything that I should have for return visits.

16:03
That's a great idea. I end up catching those kind of things either in my Google alerts or in different social media groups that I'm in. But having a primary source and I think that's, you know, something that I hope can get across to people is how important it is. if somebody is representing some information that that you know, where it's coming from.

Carrie 16:30
Mm hmm. Mm. Yeah. The FDA would definitely be the one for the primary source for drugs in the U.S. at least.

Elsa 16:37
Yes.

------ Larger cancer centers have helpful online patient health libraries ------ 16:39

Carrie 16:39
a lot of our bigger health organizations and hospitals have put out patient health libraries. So, for example, you probably see Mayo Clinic, you probably see Cleveland Clinic, Johns Hopkins has a patient health library. And in my experience, they're pretty good. They will link you out to more information. And that information is usually reputable, usually coming from one of the government websites. So I like those too. but then there's some that look like they are coming from reputable places but are probably less credible.

Elsa 17:14
that is super

------ The importance of looking up supplements (and asking the onc about them too) ------ 17:15

Elsa 17:15
helpful. where I normally end up is especially for supplements because with cancer everybody is recommending different supplements. MSK has a really good website as well

Carrie 17:27
Oh, yeah, that's one of them for sure, isn't it?

Elsa 17:31
yeah they they also source their material and they have a patient view as well as a health provider. I was I was just

Carrie 17:40
Yeah.

Elsa 17:41
there this morning looking up certain mushrooms so that's that's

Carrie 17:46
Oh yeah.

Elsa 17:46
it's so fresh in my

Carrie 17:47
Oh

Elsa 17:47
fresh in my mind that their site.

Carrie 17:50
yeah. Oh okay. So I'm glad. I

Elsa 17:52
Yeah.

Carrie 17:53
am glad then

Elsa 17:54
Yeah.

Carrie 17:55
that you mention that and yeah, because like there's all this talk about supplements, right. And even in, you know, general health like, oh is this going to make you better, This is going to make you magical.

Elsa 18:05
Yeah,

Carrie 18:05
But if you go to look for the real evidence on it, which you can find in Medline, plus you'll say, oh, there haven't been any studies done. And when you hear podcasters talk about science, like one of my favorite podcasts is science versus and they talk about different topics and they'll say, well, there hasn't been any real research on that. So I think it's important to like try to look for that yourself so you can understand

Elsa 18:30
yeah

Carrie 18:32
whether it's another sensationalist headline or something that might actually have efficacy. I mean, there aren't there are definitely benefits to certain things, you know,

Elsa 18:43
yeah

Carrie 18:43
and you just have to look,

Elsa 18:46
I'll make sure to include some of the links that Carrie and I talked about into the website for this episode.

18:55
Hopefully, this will help you sort through information as people send it to you as you come across it in searches. I think that understanding where the information is coming from and what it really means is just so important.

Narration 19:13
Thank you for joining me for this episode of Care Partners Compass: Navigating CRC. Please listen up for the next episode, which will come out next week. If you subscribe to the podcast on your favorite podcast app, you will know exactly when the next episode comes out.I hope that you'll share the podcast with your friends and family. The transcript of Care Partners Compass: Navigating CRC and additional links can be found on our website

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