(Dings)
- [Sam] Because we wanna post this on our
NNLM YouTube channel so that people
can access this at a later date.
And finally, I will say if you are interested in obtaining
Medical Librarian Association CE credits,
we'll discuss at the end, and I'll provide the link
with the survey on how to obtain the one hour credit
that you'll get for attending this
Kernel of Knowledge section.
I will just start by saying for those participating
for the first time, Kernel of Knowledge is on-going
expert speaker webinar series, presented by
the GMR that provides one hour sessions on
recent research or relevant trending topics with time
for questions from you, with you in the audience.
What's like changed today's process,
if you've done this before,
is our presenter's going to be discussing
two separate studies, so we're gonna kinda break it up,
and after the first study,
we'll pause and see if anybody has any questions about that.
And then will run through the second study,
and then again we will have additional time
for questions at the end of that one.
So, (mumbles).
Again, my name is Sam Watson,
and I'm going to be hosting here from the GMR office.
I am the Academic Outreach Specialist
here at the University of Iowa.
And our presenter today is going to be
Catherine Arnott Smith, and she is an Associate Professor
from the Information School at
the University of Wisconsin-Madison.
Today, she'll be discussing some of her findings
from two studies pertaining to health information
and how it intersects with public library workers.
So with that brief introduction,
I'm gonna hand it over to you, Catherine, and kick it away!
- [Catherine] Okay!
And here I go, sharing.
Did that work?
- [Sam] It's working, if you wanna do
the presentation mode so it's bigger.
- [Catherine] Okay, so thanks everybody for dialing in
or attending, or whatever you wanna call it.
This slide just gives a brief overview
of what I'm going to talk about today.
I'm gonna begin by introducing myself a little bit,
to help you put the research in context.
But, more importantly, I want to introduce
two main ideas for you to keep in mind
as you hear about these studies.
The first is the idea that health information
questions are very old questions,
and the second is what I will call the advice problem.
Then I will give details in reverse chronological order.
First about Study 1, which is the most recent one:
Public libraries and health information,
followed by Study 2: Public libraries
and the Affordable Care Act.
Then I'll give you a few ideas about
what these studies turned out to have in common.
And finally, minutes for Q&A.
Minutes depending on how much we talk after Study 1
and how much we have left after Study 2.
I would really like your feedback
through your questions and comments at the end,
so thanks in advance.
I am a former medical librarian,
with experience in both academic
but mostly corporate settings.
And I moved into the field of biomedical informatics
when I was a doctoral student at one of
NLM's medical informatics training programs.
This is the one that was then the Center,
it is now the Department of Biomedical Informatics
at the University of Pittsburgh.
I have been a professor at the
University of Wisconsin-Madison since 2006,
but I was at Syracuse University for four years before that.
What I'm particularly interested in,
is the role of health vocabularies
in mediating clinical information
for consumers and patients, as a opposed to
the healthcare professionals that they were designed for.
And towards that end, I studied things like
patient portals and clinical documentation,
but I also study the exchange of
health information in non-clinical spaces,
like the patient's home, archives, and public libraries.
And it's public libraries that are the topic today.
So one very important idea that I wanna get across
right at the beginning, is that while it's really
tempting to blame information technology in general,
and the Web specifically,
for a whole lot of things in life,
the fact is that people have been drawn to
medical information for a very, very long time.
And in public libraries, also, for a very, very long time.
So the earliest published evidence I have found
for medical information intended for the public,
in public libraries was actually
the Worcester, Massachusets Public Library in 1893.
And one clue that the public's appetite
for health information is in fact classic and timeless,
is the fact that every generation of medical librarians
that researches and publishes about the public's demand,
considers that demand to be a trend.
It is actually one of the longest-lived trends
that we have in librarianship.
So in 1921, a physician named John Farlow,
told the Medical Library Association
at their annual meeting,
"An ever increasing number of the community is taking
"a larger and larger interest in medicine and health.
"We cannot help noticing a very lively interest
"on the part of the public in subjects which,
"not so very long ago, were supposed to be the
"monopoly of the medical profession."
So again, he's saying in 1921, not so very long ago,
we thought we had a monopoly on this stuff.
Then in 1958, Stein & Lucioli, wrote about public libraries
"inundated by the recent flood
"of popular books in the health field."
So by 1978, and I have to say the 1970s are what most
textbooks will say is the beginning of
interest in consumer health information.
I don't disagree at all that it was
a period of explosion in resources,
but it's actually way older than 1978.
Ellen Gartenfeld, in 1978,
complained that even health sciences' libraries are
"now being asked to add to their collections
"materials that they do not know how to evaluate."
Due to the demand for them, from the public.
So the references for all these things, I've quoted
will be linked to on the last slide.
Don't worry, you'll get those.
But why am I giving you these historical factoids,
it's because I want to underline, sorry?
- [Sam] I'm interrupting you for a second,
can we possibly get you to switch your display settings?
At the top of your screen,
I think it says display settings.
And swap presenter and slide, okay.
- [Catherine] Sorry, I have two monitors,
and I wasn't actually sure which it was picking up,
(laughs) does that look better, I just switched them.
- [Woman] Yes, that's perfect, Catherine.
- [Catherine] Alright, sorry about that.
- [Sam] No, thank you!
- [Catherine] Yeah, so the historical factoid's wide
because I'm really trying to underline my long-held belief
that the public's interest in health information
has very little to do with information technology,
because it predates information technology
in the sense of computers, right?
So here's the other important idea
I want you to think about.
It's what I call, the advice problem.
I found the very first mention of the advice problem
in professional literature published in 1931
and this is a little screenshot which I underlined.
From the Wilson Library Bulletin, citation is on the slide.
This was an article based on a talk
to a Library Association given by a woman
named Katherine Dame, who was at that time
the head of reference at St. Paul Public in Minnesota,
if there's any Minnesotans out there, she's your girl.
She wrote about "unanswerable questions."
This meant, really unanswerable patrons,
like the mom she describes.
She "describes her child's symptoms over the telephone,
"saying he is running a temperature, et cetera,
"and asking what she shall do for him.
"This is no fit question for a layman" wrote Miss Dane.
"We can refer people to the books in which medical symptoms
"are handled but to attempt to prescribe for patients
"might land the librarian in the criminal courts."
So just as an aside,
I find it personally fascinating that the patron's child
is called a patient in this write up.
Was he really a patient, or was he just a consumer's kid?
These are actually the questions
that drive my research program.
But what is important here is that if the patron's child
is called a patient, the patron's question,
like what shall she do for him,
apparently runs the risk for Miss Dame,
of turning the librarian into a doctor, why?
Because the patron was asking for advice.
So this is all wedded to the long-held
public librarian fear.
That the public librarian personally
and/or the public library as an institution
will be held legally liable for providing
medical information without a license.
So Katherine Dame clearly felt it necessary
to stress this point in her article from 1931,
so clearly it's out there before 1931,
but this is the oldest reference I have found to it.
But Katherine Dame's piece was
repeatedly cited as a source for the
don't answer medical questions, you're legally liable,
in successive additions of key library science textbooks
in general reference although not medical librarianship
textbooks ever since 1931
and you still hear it from librarians today.
At an important early professional training event,
which was the California Bay Area
Reference Center Workshop on consumer health,
which was given for public librarians in 1979.
The advice problem was "a fundamental theme"
and shared by almost all the workshop participants
to the organizers when they solicited topics from the people
who were attending that they wanted talked about.
Almost everybody said we wanna talk about advice.
So the warning was given by the conference organizers
against interpretation and the giving of medical advice,
no less than six times in 13 pages
of narrative coming out of this workshop.
And they quoted examples of policies from places like
Kaiser Permanente's Library in Oakland,
the Fremont California Main Library,
and other library systems, and that was in 1979.
So it's an old, old worry.
My question for these studies was really,
how are these twin problems?
The very old need, the very old worry,
affecting provision of health information
in public libraries today?
So with that, let me kick into the discussion of Study 1,
which was the most recent one, focus groups.
These were focus groups held virtually with library workers
from all sizes of public libraries nation-wide.
Asking them to talk freely, and anonymously,
about challenges and opportunities arising
around health information in a public library space.
This study was funded by the same good people
that are running this webinar,
the folks at the Greater Midwest Region
of the National Network of Libraries of Medicine.
So how did I get library workers?
Two waves: the first wave was cold calls,
or cold emails really,
from me to a randomly selected 150 public libraries
drawn from the IMLS Public Library Data set,
fiscal year 2015, which is the most recent
available when we put the study together.
So there was quite a bit of initial interest,
but we got only three confirmed participants in two weeks,
out of the initial 150 that we cold emailed.
So clearly, to have this study happen in the spring,
a wider net needed to be cast.
So we went into the second wave, which went great.
That was asking the Public Library Association to help.
Thank you PLA, they helped publicize the study
on the Publib listserv, the PLA Leaders email list,
PLA's Facebook page, and their twitter feed.
They also ran in a late March issue of PLA's e-newsletter.
And this worked very well,
it yielded about 100 more responses.
Which turned into less than 100 actual participants,
but that's actually pretty good.
Here is an excerpt to let you see
what the recruitment message was
that went out in all these venues.
I basically said, I'm looking for workers
in public libraries, both paraprofessional and professional.
The purpose of this research was described,
challenges and rewards, et cetera.
I specifically said we are interested in
questions, experiences, concerns,
and success stories, it's all useful.
So the way it went for those of you
who've done research, you know how this goes.
Once a potential participant responded to the call,
I then sent an email with an informed consent form to sign,
and that's usually the point where people
who're vaguely interested drop out,
because they don't feel like going through
all the paperwork, but unfortunately,
Universities want you to go through paperwork.
So when the informed consent form gets returned,
that is what triggered assignment of scheduling
to one of my three students working on the project.
And all of these students, by the way,
had experience in public libraries
as paraprofessionals or as students.
So they were super into this.
57 public library workers turned out
to actually go through all the hoops,
and finally participate in the study.
Each of them got a $25 Amazon gift card.
We limited participation to get
as diverse a representation as we could to one person,
which could be a paraprofessional or a professional
of any job title, from one library branch.
Participants met in virtual focus groups
handled via GoToMeeting, between March and May of this year.
The groups numbered from two to five.
There were five individual interviews
for interested people who had like,
really complex work schedules,
so they just didn't fit with anybody else,
or sometimes what happened is they
were the only person who showed.
They were actually supposed to be
in a two to three member group,
but the other two gave it a miss.
So there were five individual interviews
but all the others were groups.
The participants were from all over the country.
This little simplistic map, it has to be simplistic,
because I can't tell you exactly where they were
(chuckling) but these are the states they were in,
I can tell you that much.
So it shows you distribution here,
but there was one weird thing that happened,
which is that hardly anybody from the West Coast
responded to either wave of recruitment.
We have actually no idea what accounts for this.
But almost everybody who did respond
from the West Coast ended up participating,
I just wish we'd had more.
So you do see this real concentration
on the Eastern seaboard, and somewhat to the West,
and then the further west you go, the more sparse it is.
So who were these folks in the focus groups?
Of the total 57 participants,
there were 14% in rural settings, 9% town,
42% suburban, and 35% city libraries.
56% of them were professionals,
now 11% of people we could identify as paraprofessionals
from publicly available information,
33% of them, it's very unclear from places
like their library websites what their status was.
I like to assume those are paraprofessionals,
because when people have Masters Degrees
in Library Science they tend to tell you.
But technically 33% of those we don't know.
11% of them were actually in jobs
that focused on children and teens,
I was kinda tickled to see that.
The job titles were varied.
We had everybody, we had a Page, we had a Clerk,
we had an Inter-Library-Loan person
who does mostly inter-library loan, we had seven directors,
and we had seven reference librarians.
Of the job titles that we were given,
only two had job titles that actually upfront
signaled a specialization in consumer health on the job.
One was called a Health Reference Librarian,
one was called a Consumer Health Librarian.
So here's what we asked them about,
the topics are on the slide.
We have just an hour today,
and I've got two studies to get through,
so I'm focusing at the moment on the one in bold which is,
"What is the biggest challenge you see
"for public library workers who
"get health information questions?"
That was actually our lead question to get people talking.
Note that people contributed multiple themes,
so in the slides that follow
what I'm giving you is the top five.
The ones that came up the most often, first,
then there was a very, very long tail after the fifth,
so I'm not gonna get into those.
Lots and lots of different things
that people thought were challenges.
On the following slides you'll see
a number immediately after the title of the slide,
that is the number of times that the thing
was mentioned in the groups by a unique participant.
So the most frequently occurring theme was, tada, advice!
It's the advice problem, this turned up all the time.
23 unique people mentioned it.
So this is perhaps the most full-fleshed of the responses,
I really like this one.
This was a librarian, a professional,
who before participating in the focus group,
she didn't know what she'd be talking about.
She said she talked to some librarians at her branch,
to get an overall idea of how her colleagues were,
how comfortable they were in working with the public.
She says the main question that kept coming up
is how far to go with the information you give.
She says, everybody's comfortable with
directing people to databases,
finding the information and so forth,
but they're having issues with how much
you actually say and how far do you go.
Why, because you have to maintain that professionalism,
not cross the line of giving too much information
or appear to be diagnosing in any way.
So I found that fascinating, of course.
After that we had patron expectations.
I love this quote, from a very large system
in the state of New York.
"I feel like I'm being asked to operate as a human WebMD"
now we could all wish for human Medlineplus,
but that's a lot to ask for, human WebMD is funny.
This person said,
"that is not something I'm comfortable with"
but it is definitely something
this librarian patrons expect.
After that, the problem of boundaries,
which is clearly related to the advice problem.
"We can find information, we're not nurses or doctors
"or physician's assistants or anything."
Followed by expertise.
I find this quote really interesting,
this came from a library worker in a very,
very small town, in South Carolina,
distant rural is ILMS's categorization of rural
and many miles from a city.
So you're really up there in the Boonies.
And this person said,
"sometimes we have patrons who come in
"and they give us what they think is the proper term
"and we have to find out what the proper term actually is.
"And that delays us in finding what it is,
"because we don't have this healthcare background."
So she's identified several problems
in this one, pithy paragraph,
that the terminology trips them up,
because it's a communication problem
between the patron and the librarian.
But because the expertise in healthcare is not there,
it is difficult to find out what the right word is,
which you see is the key to finding
the information they need.
So, I love the denseness of this quote,
and those are the top five themes.
So at this point, before getting into the second study,
I'd just like to move to Q&A!
So let's hear it.
- [Sam] Alright, well listeners, if you have any questions,
feel free to put them in the chat box.
Catherine, I guess I can start,
there was one question that popped up
on slide 11 which you were talking about
the methods and the participants.
- [Catherine] Yes.
- [Sam] From Mike, or Michael, and he was asking,
are those library-type breakdowns from IMLS data?
- [Catherine] Yes, they are.
And I'm sorry, I've gone blank on the very,
the specific code, but this is the one that gets at,
I think it's location code.
It is the most granular you get
about the kind of community it was.
If Michael wants to send me an email,
I can send him, after we're offline,
I can send him a link to where I got that from.
But those are all ILMS's labels.
- [Sam] Okay, and I believe you have your email
posted at the end of this--
- [Catherine] Yeah, that's right.
- [Sam] Okay, okay.
Catherine, we had kinda fixed the display problem,
but there's still kind of a zoom in the slides.
I don't know if that's a big thing we can fix further.
- [Catherine] Yeah, looks fine on my end.
Sorry, I'm not sure what would be fixed.
- [Sam] That's alright, another question
we have here from Ann,
what are the sources your participants said they used
to help with these situations?
- [Catherine] We asked them, and you know it's funny,
the Web has been around now long enough
that people kinda fall into shorthand.
They will say things like, oh I go to the usual,
of course we heard Google the most.
But my focus group moderator students and I tried very hard
to get people to get specific.
So what we heard the most is WebMD,
Medline Plus we heard quite a lot,
I was very pleased with that.
But I would say, we heard, "I just Google it"
or "I Google it and go to a trusted source"
much more than we heard any specifics.
Now in Study 2, there was much more data on that,
because that was a web-based survey.
But in talking, people get very informal very quickly.
So the data's not as great on that particular question.
- [Sam] Okay, and were you,
I have a question here, someone said they only got four,
advice, expectations, boundaries, and expertise.
Were there five?
- [Catherine] That was the top...
Wait I thought it was five, um.
Sorry I'm flipping back.
Oh, sorry, evaluation, sorry, I skipped a slide.
It's evaluation which was right after expertise.
Which is, people saying, evaluation is a challenge
so finding reputable sites that are easy
for them to understand, the patron to understand.
So they don't just go straight to Google to find stuff.
That was a representative quote there,
so it's basically talking about the work of doing
the evaluation for the librarian.
- [Sam] I have a question here from Elanor I believe.
So, what do these public libraries do,
when faced with questions with interactions?
Refer to their primary care physician
or refer to WebMD, or Medline Plus, or?
- [Catherine] We did have a specific question
about what agencies, entities, community partners,
et cetera, do you refer to?
And there are definitely some respondents
who are very uncomfortable with these kinds of questions,
and so their first response is
to refer to the patron's personal physician
and then if they establish that the patron doesn't have one,
or is transient or whatever, then they are saying
they go to the social service agencies.
So, in terms of sources, we do have this question,
what sources do you go to, and like I said earlier,
we don't get as many specifics there
as we'd like in the focus groups.
But I do hear a lot of WebMD, and Medline Plus, frankly.
Lots of Medline Plus.
- [Sam] Sure, Catherine your slides
disappeared from the computer there.
- [Catherine] (sighs) I have no idea why.
Alright, here we go, try this again.
- [Woman] And if it doesn't work out, Catherine, too,
we can pull it up on our end.
- [Sam] Yeah, if that works better.
- [Catherine] Is that back?
- [Sam] Yes, and I think it's in full display now.
- [Catherine] Huh, that's weird.
- [Sam] Correct me if I'm wrong, chat box,
but I think that is as it should be looking.
- [Catherine] So there's the evaluation slide
that I missed, okay.
- [Sam] Alright, it looks like we got that fixed.
I have some questions about the slides
since they're a little off center here at the beginning.
Is this something you could email out
to the participants, Catherine?
- [Catherine] Send out, oh sure.
- [Sam] Okay, okay.
- [Catherine] Absolutely.
- [Sam] Yes, we will share these slides to participants,
so that yes, it'll make a lot more sense I think.
What time are we at, here?
I think we can take a couple more questions.
Here's a question from Susan, what were the sources
of the information librarians provided?
Did they use any subscription databases, or all open access?
- [Catherine] We heard Ebsco quite a lot,
we heard Consumer Health Complete quite a lot.
We heard library databases much more often (laughs)
like people, again, people just don't get so specific,
but yes there is a strong sense that they are
using library databases when they have them.
But I had several respondents talk about
going to free web sources right away,
because of the terminology problem.
That the librarians themselves don't seem
always to feel comfortable searching
the library databases, which is rather ironic.
And so, and I don't know if,
how people feel about Consumer Health Complete,
but I actually teach a course in digital health where we,
which Sam was a graduate of, and we have,
I have my students walk through the different
library databases that purport to offer
consumer health stuff, and what is kind of ironic,
is that the products out there, I feel,
have a very advance level of terminology a lot of the time.
And I heard this in my focus groups,
that they have started, some of these librarians
have started to go straight to free web stuff
because they know their patron will understand it.
So it's definitely a conscious choice
to turn away from databases sometimes,
which I think is way better
than an unconscious choice (laughs).
- [Sam] Right, right.
Okay, just in the essence of time,
I'm think I'm gonna have this last question here
and we can move on to the next study.
And if we have time, I can go back
to some of these older questions
if we have some more time at the end.
So this last one here I have,
what kinds of training for other staff in the library
would be helpful to address, or improve,
on these five key topics, any ideas?
- [Catherine] Yeah, so and we can talk
about that at the end of the presentation, too,
because that is definitely as you might imagine,
what NNLM is really interested in.
And we did ask an explicit training question,
we asked for their preferences in training,
as well as content of training,
and what we heard the most,
and I always hear this whenever I ask, is webinars.
Everybody wants webinars, all the time.
So the challenge I think is there is some of this stuff
is going to be difficult to put in a webinar.
Because it's so interpersonal.
And so, it's not quite as easy as
throwing up a list in PowerPoint,
sort of like I'm doing right now.
But I would think that, several folks said
they really liked in person.
And I think what I'd love to think about
is how to make these interpersonal situations easier
for library workers through a webinar,
because that's what they want.
- [Sam] Okay, alright we're getting
a couple more questions in,
but in the essence of keeping us under the hour,
Catherine, I'm just gonna have you go on to the next study,
and then I'll see if I can pull on some of these at the end.
- [Catherine] Okay.
So Study 2, was the national web based survey,
and I offer this in part because I think
some of these responses really relate to Study 1.
But also I think it's interesting
to look at how these particular challenges
these big ideas I asked you to think about at the beginning,
and the attitudes among public library workers towards
these challenges really play out in the context
of the specific health information need,
i.e. enrollment in the Affordable Care Act health plans.
So Study 2 was a study of the effect
of the ACA on public libraries.
And I should note, in case anybody was at NLMA 2017
I actually was recovering from surprise surgery
during NLMA 2017 so my co-researcher,
Alla Keselman, and her colleagues
who were at the Specialized Information Services Unit
within NLM, they presented results of this study.
I'm not gonna completely repeat myself,
but if anybody would like a copy of the NLMA presentation,
just send me a note, and I'll be happy to send that to you.
I do need to tell you a bit about
the methods and the content of the survey
for you to understand the findings,
but I'm not gonna repeat what was presented in 2017.
This was a web-based anonymous survey,
that was funded by NLM-SIS,
and the survey was designed with a lot of consultation
from UW-Madison Survey Center.
It was me and Alla Keselman, Janice Kelly,
and Colette Hochstein, at NLM-SIS
who came up with the questions.
Then the survey center actually
deployed the web-based survey
and handled data collection responses to the survey.
And respondents were incentivized
with an iPad for the library, not for them personally.
So the population we targeted,
was staff at central libraries located in 20 US states.
And the 20 were the 10 with federal health exchanges,
and 10 with state exchanges under the ACA.
And we pick the 10 on each side,
for having a low ratio of central libraries per capita.
Which was my crude way at getting around the fact that
because of course public libraries are so community driven,
they're so subject to local control,
that it's difficult to come up with a stratified sample
except by things like community size.
As we already discussed, and the problem is that
I've never felt that really gets at some of the things
that are really important to public librarians.
And so, we use the impact, high impact measure,
basically means, states like District of Columbia,
and Hawaii, have one central library for the whole state.
So, by picking libraries in which there was a very
low ratio of central libraries per capita,
we were trying to establish
that the library really mattered.
So we took the 10 federal, 10 state health exchange
libraries in every single central library
in those states got a print letter pointing them
at a web-based survey.
So the initial invitations went to library directors
and heads of reference and public services,
the survey respondents who consented got 22 questions
and a number of these questions
had free-text response options, which were very, very rich.
The people who completed the survey
could enter a raffle to win that iPad.
So the questions really fell into two principle categories:
the first was consumer health information resources,
specific, what do you use to answer these questions,
because of course, that's what NLM really wanted to know.
Then the second set of questions were around
the ACA specifically, and library activities.
So of course there will end up being overlap
between some things, and the survey ran
from September to November 2016,
held up by a lot of bureaucratic, I'll just say barbwire.
So this was later than we wanted to run it,
but what was odd was,
that with the pending presidential election,
it turned out to generate much more response
than we had actually expected, which was a good thing.
So the results were this,
we had 487 responses, of which 277 were complete,
that is they filled in every single option.
Almost all the rest were nearly complete,
so the survey center tells me I can say the response
rate was 32%, which is actually pretty good
for social sciences, believe it or not.
The breakdown of response by community size,
here I used the larger bins from IMLS.
Rural 57%, suburban 25%, and urban 18%.
The next slide will show you
from whence in the country our responses came,
the numbers tell you the count of respondents
from that particular place, if there's no number,
that means there was just one response.
So remember, unlike Study number 1,
we were only surveying people from 20 states,
but you still get this big Eastern seaboard concentration.
But way more in the West.
So I will focus here on responses
to just one of the 22 questions we asked,
given the audience for this webinar.
This was not presented at NLMA 2017,
it's completely new data on this question.
This question was,
how can NLM help the library handle activities related
to health information and the Affordable Care Act?
So 51 respondents actually had trouble with the question.
Two of them felt no improvements were needed at all,
everything is just fine, thanks.
And two said, I don't know what NLM is.
NLM should provide, said the other people, these things:
Training (chuckles) biggest response, training.
"Librarians need to know exactly what is available"
said a rural library worker from South Carolina.
Webinars, we want "free online webinars that are archived.
"Staff can only take training in
"one-hour increments at odd times"
an urban librarian from Louisiana reported.
So "archived webinars", this person said,
"are an important resource."
"Webinars on basic medical terminology,
"health information resources,
"and collection development guides are always useful"
said an urban librarian in Ohio.
So specifically to the Affordable Care Act,
these particular comments,
that "libraries were listed as resource centers
"for the public; however, no training was provided,
"which made it almost impossible to do
"anything meaningful for the public."
and this says no state provided
because approximately a quarter of the responses,
even though, remember, they could get an iPad
if they said where they were,
because otherwise we couldn't send
an iPad to their library, even with that incentive,
a good 25% of respondents did not provide information
on where they were from, beyond a very,
very general community answer which is why I can say
it was rural, but I can't say where it was from.
So, that's interesting to me.
"The main barrier," said a rural librarian in Minnesota,
"to helping librarians, patrons with ACA
"is that we in small, rural public libraries
"are so short-staffed that we don't have time
"to go to trainings that are hours away."
So this is another vote for webinar, webinar please.
It doesn't help the time problem,
but it does help the distance problem.
And a rural librarian in Colorado said that,
"training staff to know how to help and how to protect
"ourselves legal, sic, by not giving misguided advice"
so there's advice raising its head again,
and saying hello, this is something
that people are concerned about.
And I actually heard from 4% of the sample,
4% of the respondents that they did not give out
medical information and would not answer
medical questions because of the advice problem.
And so this seems to have been
an issue for ACA questions, as well.
The next largest category was actually
what several people asked about in this webinar,
which is what are people using,
what information resources could NLM help provide,
so I really like some of these.
First, "idiots Guide to the ACA or ACA for Dummies."
but this librarian said why.
"It's hard to understand for the untrained person"
I would completely agree,
"explaining it in simple terms would be great."
So I think this is interesting not just
for the ACA specifically, but for any initiative
that is given to us from above in our org charts,
such as the White House.
This is something I heard a lot,
is that that will mean that it is hard to understand
for the untrained person and so the library workers become,
of course, the bridge to this important information.
Then there's this one, I like this one,
from an urban librarian in California.
"Make full text of articles and reports available online."
And finally, I love this one,
this could be a bumper sticker.
"Make use of Medline Plus as well known
"as calling 911, Smokey the Bear, voting."
Just love it, and it's from a rural librarian in Maryland.
Then there are a few comments I wanna highlight for you,
both positive and negative as to the relationship
of the library to programs like the Affordable Care Act.
And I wanna underline again,
that this happens to be about the ACA,
but I actually think it could be true for any federally
stimulated, health related thing
that public libraries are gonna be asked to do.
So positives, I heard this quite a lot, frankly,
in both studies, and the ACA study I heard,
"community expectations mean that we make
"one of the best program partners
"for presenting information government programs,
"they trust you more than they trust us"
from a suburban librarian in California.
I heard that quite a lot.
I heard rural library workers in Study number 1,
who would tell me stories about patrons
who are coming to them with lots of health questions,
like individual people who clearly have health needs
and it's the trust factor that makes them do this.
And that that is why libraries struggle sometimes
because they recognize that they are the trusted source.
Then an urban librarian in Georgia reported that,
"staff loves to help patrons find what they need.
"But it worries librarians, because it is such
"a critical and sensitive area.
"People's lives depend on giving the correct answer."
Now that is something I would expect to hear
from a medical librarian, it is wonderful
and a bit scary to hear it from a public librarian.
Because it's true.
"Having brochures with clear,
"concise information is badly needed."
So this library worker would like NLM
(chuckles) to do more brochures.
Here's negatives, just to illustrate
why this is a challenge.
"We mostly distribute information in the form of fliers
"pertaining to the Affordable Care Act.
"We do not answer medical related questions,
"we refer them to medical professionals
"since we are a public library."
And that's an urban library in California.
And then a rural library in North Carolina
respondent reported, we don't do that.
"It is not the responsibility of the library
"and its employees to help people sign up
"for the Affordable Care Act.
"Our State Librarian has supported our libraries
"on this and has told us not to do so."
I find that fascinating, because in fact
in Georgia, this is what happened.
The State Librarian did say don't do it,
in North Carolina it was not quite the same directive
and I did hear from a number of North Carolina libraries
that either didn't get the memo or disagreed
with the State Librarian, but this particular respondent,
this was their justification:
"There is too much personal information required,
"it is not the responsibility of public librarians
"to help people to apply.
"Private and personal information that is
"none of a librarian's business to know."
So I think again, in the wake of
other federal initiatives, you have to acknowledge
that librarians like this are out there,
and that's a quote from that
particular one in North Carolina.
So, just to throw out some ideas here,
about the difference between advice and information.
What is the difference, it's a hard one.
And what are the implications for training
public librarians in the health information space?
Whether it's post-NLS training, paraprofessional training,
on-the-job, or pre-NLS training,
which is the kind I have to worry about as an educator.
Very few incoming students to the NLS program
in which I teach, which has been around for over 100 years,
but I'm their first full-time medical person.
Very few students have any idea when they come in,
that there is such a thing as a medical librarian.
If they had paraprofessional experience
in public libraries, nine out of 10 of them have learned,
on-the-job, that public librarians
don't answer medical questions.
So these are student preconceptions
that are hard for students to get over initially.
There are also some pedagogical hurdles that my colleagues
and my directors and deans have to jump over.
When Katherine Dames wrote that piece about
unanswerable questions in 1931, her words were resonating
in general reference texts for decades.
Decades and decades that lived on.
But in 2018, I think it's really important to understand
that consumer health information
isn't just a reference thing.
So we see, and there's been research on this,
wellness topics are popular in public library programs
what I find fascinating is I heard
in my focus groups study, Study Number 1,
I heard a lot about programing.
Very interesting stuff on programing,
even in the same libraries where the same respondent
distances herself from answering medical questions, says,
"I walk away once the patron is sitting at the terminal,
"because I don't think it's my business
"to help them evaluate information."
In that same library, I'm hearing they do programs
on wellness and alternative medicine.
So, health information is clearly all over the library,
and its programs, its collections, both print and digital,
for the baby book readers through the senior citizens,
it's not just a reference thing.
But one thing I heard over and over again,
from my focus group participants was that
their general reference class was the only place
they might ever have heard about medical questions,
and when they did, it was usually
in an information ethics context,
or as an example of difficult questions
that might be against library policy to answer.
That's when they heard about them.
So finally, despite all the requests from participants
in both Study 1 and Study 2, for lists of resources,
good resources, curative resources, high-quality resources,
just resources, consumer health information provision,
we all know, is not a problem that
is solvable just by a list of resources,
because it's fundamentally a transaction
between human beings that have been trained to be sensitive
to what they know, what they don't,
what they can answer and what they can't.
And when and where they should refer outside the library.
That is not something you can do a bullet list
and throw it up on your website
and hope that it's done, right?
So for next steps and research,
I'm interested in evaluating the entire library
as an institution in the context of its community
to really understand that free-flow of health information
in, within, and out of the institution,
because it's really clear from my two recent studies
that public libraries do have an important role to play
in health information provision to the public.
There are library workers doing amazing things out there,
which I will be writing up.
There are also library workers
who would like to be doing amazing things
but they are scared.
And I think those are the folks
that really need the training.
So with that, let's do more questions.
And here's my email address,
so if there's something you wanna talk about with me,
feel free to write.
Or if we don't get time to address your question,
feel free to write.
- [Sam] Okay, sorry, I had to unmute myself.
I guess pulling in from some of the questions
that have been coming from the second study,
I know you're talking about your actions being more
transactional than just a list of resources floating about,
do you know of any training or resources available
that address this health information
versus medical advice issue?
- [Catherine] There is some good stuff out there,
and it's mostly in the information ethics category.
And I have a colleague who's a lawyer
who teaches information ethics at my school,
and this I something that he and I
have talked about quite a lot,
the whole question of where is the line that you draw.
I actually, if that person wants to,
that questioner wants to send me an email,
I can point them at a text that I use
when I teach my digital health class.
But I think the difficulty is
it doesn't tend to work its way into
the required reference-like courses (chuckles).
It's sort of, you have to take an elective
that sort of presumes you know you might be interested
in health information to get the really good stuff.
That's always been a challenge in our field, I think.
- [Sam] Alright, okay, another question we have from Noah,
in the discussions of health programs,
did you notice any trends in terms of
what types of programs were offered?
- [Catherine] Oh is, yeah.
- [Sam] Assess them in any ways?
- [Catherine] So it must be,
I bet it's Noah Lenstra, is that Noah Lenstra?
I bet it is.
Yeah, so yeah, we had a specific
what kinds of programing are you doing and it was funny,
the answers were either no, we're not doing any,
and then we would ask like, why do you think that is?
And it tends to be because the people that said no,
they would say, well now that we're talking about it,
it would probably be a good idea,
but we're very patron driven,
so if the patrons come to us and say we want a program
on how to recover from bankruptcy, we'll do one.
So you'll have a sort of weird situation
where a lot of patrons don't realize the public library
is a health information place,
and so they don't ask for health programs.
The other kinds of responses we got were,
oh yeah we're doing lots of programs,
I would say that 90% of them are in
what I would personally call wellness.
Yoga, lots and lots of yoga.
Way more Tai Chi than I thought there was in the world.
Things that get people moving,
things that get teens and children
off their computer screens, heard a lot of that.
I did not hear a word about evaluation of these.
Except for the usual the gate count,
because libraries have to report those.
And so people were very aware
of what their biggest programs were
because size is something of course they're thinking about.
But in terms of evaluation,
that's an open research question.
- [Sam] Okay.
I have another question here from Michael,
he says, many state library administrative agencies
have established relationships with public libraries
and are prepared to deliver CE to the public libraries.
Have you considered working with
Chief Officers of State Library Agencies
to help provide some "canned CE medical info presentations"?
- [Catherine] Yeah, I think that's a fantastic idea,
I as a full-time professor and a research one (chuckles)
don't get to do things like actually deliver services.
But, this is something that I want
to talk to my public library student graduates about,
is how best to get this information.
Here in Wisconsin, we do not have a State Library,
we have a State Library-like thing which is
an entity within the Department of Public Instruction.
So I have wondered about talking to folks about
how best to do this, you're right, it's a very good idea.
I just, I have a full-time job doing something else,
so it wouldn't be me, but I think it's a great idea.
And I did actually hear from the focus groups
many, many comments about their State Libraries.
And what they do, so there's clearly,
that's a great way to go.
- [Sam] Great.
Let's see, I'm seeing some Ann Glusker in the chat box,
and also quoting a lot on ALA resources,
so if you're interested in seeing some of the things
that she's recommending, there are links provided there.
Looks like Elanor asked a question,
you're talking about the programing that is provided
in some public libraries, she asked us,
does wellness equal preventative med?
Or are these more lifestyle and info classes?
- [Catherine] That's a great question.
I would say, they are more lifestyle, but I heard,
my respondents would say things like,
I believe, personally that this is preventive medicine.
And they would say, stress reduction,
we do things that have been proven to reduce stress.
So I think the motive is definitely preventive,
it is not clear to me from what my respondents say
that that makes it into the programing,
it's almost like, they think that's the pitch
is to imply that it's for stress reduction.
How much of an evidence base is talked about
is really hard to tell (laughs).
- [Sam] Right.
I guess pulling back from the end of your first study.
There were some kinda back and forth questioning on
turning away from no resources being a scary thought
to some of the participants here.
There were questions about what about
ensuring it's evidence based, or?
- [Catherine] Sorry, can you clarify
ensuring what is evidence by?
I'm not sure what is the scary thought here.
- [Sam] It was...
Sorry let me pull it back up here.
Talking about the free stuff on the web and just ensuring,
I guess gauging accuracy, helping patrons--
- [Catherine] Yeah, and we actually had a question
about how do you personally assess what you find.
It's the turning away anecdote really is funny,
that she told us that's what she was doing.
I have heard that before in other interview studies,
and it basically, it is happening for a good intention,
but I agree, it is frightening.
Basically, people who express this are saying,
I don't think it's my business to tell my patron
what they should believe online.
And so they're stopping, because they consider that advice.
How that particular library worker reconciles that
with putting on a program on a wellness topic,
I don't quite understand, because it seems to me that
putting on the program is also a kind of advice,
if you're gonna go that far (laughs).
But there seems to be much more acceptance
of community partners coming in and doing programs,
and people who are practitioners in the community
like chiropractors, or massage therapists,
there seems to be this idea that, that isn't the library.
All the library's doing is hosting that,
just like they host somebody who gives financial advice
or talks about makeup or something.
And so librarians seem to feel much more comfortable
because it's not them doing it.
(laughs) It's the people they invite in.
- [Sam] I could see that.
Okay, as we are winding down here, are there any,
maybe a final question from anyone?
If not, I will thank you, Catherine,
for speaking to us today,
and thank everyone who participated for watching.
- [Catherine] Oh, thanks very much, folks.
And thanks for listening and like I said before,
just shoot me a note if there's more you wanna
talk about, this is my favorite subject (laughs).
- [Sam] Sure.
I am gonna take back control here with my slides.
Let me go to...
Yeah, sorry.
If you are interested in the, oh goodness.
The references here for what Catherine was discovering,
I'm just gonna leave this up for a minute
so that it's caught on the video.
I'll also provide, if you are interested
in the MLA credits, I'll provide a link
in the chat to everyone here.
I will also include in a link to those references
if you would like those, and...
And I will also send these out in the email
with the slides, since I know we had some
technical difficulties at the beginning.
So the second link here for the survey,
will get you the MLA credit.
If you don't want the credit,
we still ask that you take the survey
so that we can see how we're doing here
with these presentations that way we can
make improvements and implement changes.
Again I will thank everyone for participating,
and I'll just stick around for a moment or two--
- [Recording] This video is produced by the
National Network of Libraries of Medicine.
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