In the early 1990s Dr. Felice Aull, a professor of physiology at the NYU School of Medicine, wanted to organize the readings she was using with students. With the help of her husband, Dr. Martin Nachbar, a pioneer in the use of computers, she created the Literature, Arts and Medicine Database, an open-access collection of annotations that explore the connection between the humanities and health. By 2012 when she retired and I became the Editor-in-Chief, the site attracted an estimated 1,000,000 visitors annually. Recently, I spoke to Felice about the early days of the Database and the creation of this site. The interview is lightly edited for clarity.
Lucy
Felice, first of all, can you talk a little about your background, what you were doing professionally just before and during the time you did the Database?
Felice
I was on the faculty at NYU School of Medicine. I was trained with a PhD in physiology, was hired as a physiologist, and I taught medical students physiology, but most of my life. I’ve had this dual interest in literature and in biology. And in fact, that’s from high school on, and when I started college, I had to make a decision about whether to major in English or in biology. And I decided to major in biology because I thought, well, I can do literature on my own any day, and I’ll never be able to make it a profession. Whereas, you know, I can’t do science on my own, I have to be trained. And so that was the path I took, which was a science path, but I never lost my interest in reading and thinking about literary things. And let’s see, at one point I decided to start a discussion group with the medical students and any faculty who were interested. It was a small group, and it changed from year to year, but we met once a month, and I would, initially, pick out readings. They were short readings because students don’t have much time to read non-medical stuff– poetry, short stories, essays, and that continued for several years. At the same time, and really, I have to say that without my husband’s help and interest in what I was doing none of this would have happened because he of course, was interested in the use of technology, computers in medical education, but he was also interested in what I was doing with my literary stuff. So he set up a database for me on my own computer.
Lucy
And this was in the early 1990s.
Felice
Yes, 1993 or thereabouts; he set up a computer program for me so that I could keep track of the readings that I was doing with the students, because I didn’t want to repeat anything with the same group, essentially. And I also was kind of following the work of Joanne Trautman Banks, who was a pioneer. She really was the one who started the field. I have to give her full credit. In 1978 she published a book of annotations of literature that had to do with medicine. I don’t really remember how I found it, but it was very helpful in my own work with the students. I decided, basically, to copy what she did, with some modifications of my own, in my own database that my husband Marty Nachbar helped me to set up. So to begin with, that’s what we did. Marty’s idea was that I should recruit other people in the field who were doing this kind of teaching with their students, and who might be interested in submitting annotations to this database. And secondly, that we should make it online, so that anybody out there who has access to the internet could stumble on this thing and maybe get interested. And the idea, his idea, was that it might expand the whole field, which was, at that time, just literature and medicine.
Lucy
I had the privilege of knowing your husband and saw how he was really ahead of his field.
Felice
He was a visionary. Definitely not just with that, but with all kinds of stuff that had to do with tech. You know, computers in medical education.
Lucy
He was a big help to me when I had a grant from the NIH to do a project. He really zeroed in on its strengths, its weaknesses, and helped me in a very generous way. Just to backtrack a little bit, how did you choose the work that you shared with the students? What were you looking for when you selected certain work?
Felice
I really had a pretty broad range of what I chose, and how I looked for it. Of course, if it was something to do with doctor or resident or medical student experience with patients– that was what I was looking for. But then there was patient experience, also from the patient’s perspective, how they were interacting, and what their feelings were about their illness or disabilities. And then as I started getting interested in this, I decided I really needed more training, and I decided to get a master’s degree, not in literature, but in something that was called at that point, humanities and social thought– that was the track at NYU in one of their master’s programs. And through that, I got really interested in the social thought part and societal issues that directly or indirectly affected medical practice, patient experience, and so forth. So that really also was important for me to get that degree, because when I started recruiting other faculty from other institutions, they [thought] I was an imposter. I was coming into that field without any background other than my interest in it. And they did not think highly of my intrusion into their field, and I don’t blame them. But you know, when they got to know me and what I was doing, they sort of became more accepting. But the thing that really clinched it was when I started this degree program, because then they felt okay, she’s serious. She’s going to get some professional training that makes it more legitimate to be associated with her. But of course, it was a really great thing for me, because it did give me a lot more background for what I was doing and what I would like to have been doing.
Lucy
You were very successful in recruiting a national board of editors.
Felice
Yes–the contributors were from all different places. They were very interested in making this a national internet-based project, because they were interested in furthering the field, and they saw the potential if it was on the internet, But initially I also had two NYU medical students who helped me choose material and write annotations. And then the site, especially once it became web based, was heavily used by so many and got so many hits–about a million a year.
Lucy
It’s clear that the users went beyond medical students and physicians. What do you think attracted the wider audience?
Felice
Well, I would occasionally get some notes, you know– I think there was a mechanism– I don’t remember exactly, where a user could contact me or somebody who was paying attention at NYU. What I found really interesting was there were patients who were using it. I don’t know what percentage of the users were patients, but there were patients who found stuff that was helpful to what they were going through. And so that was interesting to me, and I thought it was important, you know, it wasn’t my original intent to reach out to patients. It was really more of an education-based thing, but there it was. And why not?
Lucy
We’re all patients at some point in our lives.
Felice
Yes, right. That’s exactly true– issues about death and dying, not necessarily for the individual person, user, but family of theirs, friends who were in serious medical situations–all of that, it makes, made sense. So the audience became very broad.
Lucy
And also you expanded the format.
Felice
Well, first of all, when we started in 1993 there wasn’t a worldwide web. It didn’t exist. There was an internet. But the program that allowed people to access the internet was called Gopher, G, O, P, H, E, R. It was much more primitive but that’s what we started with, we put the annotations on this gopher program. Marty’s associate, Roy Smith, was instrumental in helping to set up the gopher program. Roy maintained his interest in our project as it moved forward. Then maybe a year or two later, I don’t know what the time lag was, but when the World Wide Web became available to anybody, I recognized that that would be really important, because it allowed you to make links with hypertext. You could make links between annotations; if you were referring from one thing to another; you could make links to art if you were annotating an art piece. You could make links –that was so key. So the web was just great. That was the way to go. And we were just lucky that it was there pretty early on.
Lucy
You recognized its potential.
Felice
And that wasn’t just Marty, actually. That was me.
Lucy
And you chose the format of annotation versus a longer review. Was your goal to divide it into summary and commentary, specifically so that people understood what the work was about, but also how it connected to medicine and health?
Felice
I was going back to the format, or a slight modification of the book that Joanne Banks published in 1978. I think she used key words and a short paragraph about what the work was about. I think I expanded it to make both a summary and a commentary, because I thought that would be more helpful to people. I was modeling this thing after what she had done in 1978 and then again, she published another version, an updated version, I think, in 1982. In fact she and I had a phone conversation about our respective projects.
Lucy
One of the strengths of the web site was open access. You didn’t have to subscribe. That was important to you, I would imagine,
Felice
Marty was very insistent on that. There were people who said, Oh, you should be charging something or whatever. And he said, No, if you want to make people aware of this field, you just make it completely accessible,
Lucy
And it stayed that way, and the new site is open access. That leads me to ask, what do you think the role of health humanities is now?
Felice
You know, with all this artificial intelligence stuff, –I was reading about, or I saw online, a woman who, instead of having people as friends, she has some kind of an AI setup. And she’s not the only one, apparently, who’s, you know, relying instead of on human contact –on these bots. To me, it’s mind boggling. So I think there is definitely still importance to making this kind of work accessible and promoting it. And I also think it still should be part of medical education, health education, and it should be accessible to anybody who wants it.
Lucy
Moving on to our new project. It’s based on the database but one of the differences, in my view, is that we’re including reviews that are a little more in depth than the annotations. How do you feel about what’s going on with the new site and how it’s evolved? And you can be honest. I mean, please.
Felice
I think it is different from the database, and that’s good. It’s fine. You have your own vision of what you’d like to accomplish, and I think it’s working well, you’ve recruited people who’ve written some interesting things, not annotations, but more like essays. And you’ve expanded it so you have included art. I don’t know what else you’re planning to do, but I think it’s a good site, it’s valuable. It’s nice to have something up there that’s medical humanities related. And I really admire what you’ve done.
Lucy
Thank you. I think one difference is, you pioneered using links in the old database, and we’re using links much more now that it’s possible to do so. So if we review a book, then the author is interviewed by someone, we might link to the YouTube video. That’s been interesting to do and adds to what we can offer. It’s hard to know who’s using the site. We’re still in the very early stages, but I think it has a fairly broad appeal beyond just practitioners whether they’re doctors, nurses, or trainees, and I’m trying to have the public be interested in the work that we choose.
Felice
I think you have your vision of the website, and that’s what you’ve voiced here, but it’s not my view of medical humanities.
In fact, I found this online at George Washington University, on their medical humanities site, and they quote me, but they don’t acknowledge that it was me, where I wrote: “Medical Humanities is an interdisciplinary field that includes the humanities, social sciences and the arts and their application to medical education and practice,” and then whatever education materials people develop that are designed “to help students develop and nurture skills of observation, analysis, empathy and self-reflection, skills that are essential for humane medical care.” [Quotes are from the GW website and were at the original NYU medical humanities site.] Especially the first part that I read, I mean that it is a broad, interdisciplinary scholarly field. That is how I have always, or at least for many years, maybe not in the very beginning, looked at it. So that’s a little different from what you are trying to do. And I’m not criticizing you in any way. I mean, I’m just recognizing that there is a difference in what you want to do with your site and what we did with ours.
Lucy
One of the things that the database could do was show different cultures and describe experiences that the students themselves might not have directly. It would be a bridge into other cultures, and that’s when I say. it’s a lens on the human experience. That by reading literature, by reading about other societies, and what people who live in those societies go through, which you know only too well, it broadens your ability, hopefully, to empathize and to understand the differences among people.
Thank you, Felice for speaking with me today and for your editorial guidance throughout the years. It’s been an extremely fruitful collaboration.
Web image by Medhum.org
