Dissecting Digital Health - Interviewing Dr Patti Brennan

Dr Patti Brennan is a bit of a legend when it comes to health informatics and nursing informatics. I had the pleasure of catching up with Patti when she was in Australia to keynote HIC 2016. It was just before she took up a new challenge as the Director of the National Library of Medicine (NLM) in the US. She is the first female and first nurse to hold this prestigious role. I loved chatting to Patti and hope you enjoy the podcast of our wide-ranging conversation.

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This is the full transcript of the podcast Dissecting Digital Health with Dr Louise Schaper, interview with Dr Patti Brennan, currently Director of the National Library of Medicine.

Guest: Dr Patti Brennan, NLM
Host:
Dr Louise Schaper, HISA
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@louise_schaper Tweet Patti @NLMdirector
Production: This podcast is produced by Ivan Juric


Full Transcript

Opening remarks by host Dr Louise Schaper

[00:57] Louise: Welcome to Dissecting Digital Health. I’m your host, Louise Schaper. I’m here this week broadcasting from the HIC Conference in Melbourne, and I’ve had a lineup of amazing guests and today is absolutely no exception. Today I will let you know who my guest is — no, actually, I won’t! I’m going to get the guests to introduce themselves. So, guest, who are you?

Today’s guest, Dr Patti Brennan, introduces herself and talks about current trends in healthcare and health information technology

[01:17] Patti: Can I say friend of Louise as a starting point?

[01:20] Louise: You can start there.

[01:21] Patti: I am Patti Brennan. I am a nurse and an industrial engineer. I’m currently a faculty member at the University of Wisconsin, Madison, and in two weeks I will become the Director of the National Library of Medicine at the U.S. National Institutes of Health.

[01:35] Louise: Okay, great. So, basically, you’re not a really busy person?

[01:38] Patti: Well, not as much as I used to be, because I don’t have any graduate students anymore, and my son is raised, but there was a time it was busier. My mother worries about it being too busy, also, for me, and what’s really interesting about what’s happening in healthcare and health IT right now, is things are converging, and so it’s less silence, so there’s more of an interplay between some of the research ideas that I work on, which is, “How do people take care of themselves?” Some of the technologies that are emerging, and to use those in helping people to take care of themselves, and then some of the tools that we have to study how people take care of themselves. So, it used to be that we had to stop in, interview people, meet them in their homes, and that’s pretty intrusive, and sometimes pretty time consuming, and people often felt on a stage. In the last five years, I’ve been using virtual reality to study homecare, where we take a specialised camera in the home, we take full 3D images of the house, that we’re then able to replay in a virtual reality cave so we can study the household space over and over again, to figure out, “What are the features? Is it cluttered? Is it where someone can have a private moment to change a dressing or a place to safely store health information?” So, in response to how busy am I, I’m less busy than I was 10 years ago, because things are starting to come together differently.

[02:59] Louise: I like that. So, the convergence that we’re experiencing in health and health care technology — you’re seeing that reflected in your own work and your own life?

[03:05] Patti: Absolutely.

Louise and Patti discuss healthcare technology and how virtual reality applications in homecare study help in understanding how patients organise their lives around their health.

[03:08] Louise: What an interesting perspective. The virtual reality stuff — how does that work? So, you’ve got a camera, and it’s mapping the dimensions of the space. What about people’s movements in there?

[03:18] Patti: So, actually, this is very interesting. It’s a laser, so we can’t have people in the scene at all, and actually, for this particular part of the study, we’re not interested in what a person does in the space, but how the space invites or interferes with the people’s ability to take care of themselves. So, if someone comes home from the medic’s office, and they have a bunch of papers and medication, and they have a counter where there’s clutter and there’s no shelf to put things on, how do they sort that out in their lives? Well, there’s a whole other arm of our work that studies, “What do people actually do?” We’re also interested in, “Does the organisation of space make it easier or harder for people to take care of themselves?” We’ve learned, for example, that older people who are on many medications a day — some, not all — have a habit of getting up in the morning, breaking up their medications to the proper times, and then moving those medications around the house to where they expect to be at that time. So, lunchtime, medications are at the kitchen table, morning medications are in the bathroom…

[04:03] Louise: So they do that in the morning?

[04:21] Patti: They do that in the morning each day, so they sort of arrange their day and their medications. Now, we don’t know — we have some thoughts that maybe it’s the visual cue of the pill cup that reminds them to take their medication, so it increases compliance. Maybe it’s integrating the medication into their everyday routine, like when I’m sitting watching television or I’m knitting, so the person doesn’t have to be reminded that there’s an illness component of their life, but rather they fit health into their lives. We’ve also learned some very interesting things. Some people have a very strong sense of privacy in their homes, and for those people, cabinets that have solid doors or drawers in them are much more important than the kitchen refrigerator which is often where people tack up information about, “my doctor’s appointment is coming in two weeks.” So, we find that people make a trade-off between the affordances of the home that invoke privacy, and those that stimulate memory. We’re just scratching the surface about are there ways we should be coaching people as they begin to go home, are there best practices people could learn from each other? What we do know is there doesn’t seem to be any one that’s best. People fit health into their lives.

[05:36] Louise: Fascinating. Are you going to miss that?

[05:38] Patti: Yes, of course.

[05:41] Louise: Because you’re talking about it so passionately!

[05:43] Patti: Yes.

Patti talks about how patients inspire industrial engineering design as well as medical informatics design and discusses issues around privacy

Over the last 25 years, we’ve been in a thousand households, and the experience of meeting a person, where they live, and then exploring with them what they do with health and health information, inspires industrial engineering design and medical informatics design in ways that you can’t imagine.

But, it also has helped us be able to do things — we have provided advice to the U.S. federal government about data privacy and helping to expand the thinking about privacy at the federal level, not just to HIPAA, but also to privacy in the home. What does it mean if we’re going to use a website to coach a person through, say in the day after a disfiguring surgery, or the monitoring of sexual desire to improve a sense of connectedness in a family? Those invoke a very different model of privacy, and because of the work that we do, we’re able to certainly not bring the government into people’s houses, but help the regulations recognise that some things that are under the control of the individual are not protected by our regulatory privacy rules that protect organisations, and so as clinicians work with patients to help them understand an information basis of healthcare, they can explore with them, “well, how are you going to manage this information in your home? Where would you store this? Where would you keep this?” So they can not only guide the person about the content that they might need for self-monitoring, but how to preserve a sense of self-dignity while they’re monitoring it. Our group overall, for a number of years, has tried to work out, “What is the information basis of healthcare?” We often think about the physiologic base of health care, or maybe the psycho-socio basis of healthcare, but as a nurse I think a lot about how we help people function as whole people, and part of that is helping them to understand the information that helps them to maintain their health and well-being.

Louise and Patti discuss patient response and expanding the understanding of how technologies can support patients’ lives

[07:29] Louise: Yeah, and what sort of response do you get from the patients themselves?

[07:45] Patti: I would say the most common response is people say, “Well, I’ve just always done it this way,” and when you start to probe with people about how they store prescriptions, or keep baby records, or put insurance cards into a wallet, they have a very elaborate, and actually quite impressive structure, of why certain health activities and health information management is done. “I might need this, so I keep it in my wallet, because I might need it at a moment’s notice,” for an insurance card, or, “I don’t know what to do with this report from the doctor. I might need it sometime, so I stuff it and file it in the basement.” And so that has helped me to understand three things.

First of all, it’s really helped me to understand the strength and abilities of the people that we work with. We make so many assumptions about that either patients are willing to do things that we tell them and they’ll just do them, or they’re not willing and we diminish them, but this way, we’ve learned to identify assets of the individual.

The second thing that we’ve learned, is that the discharge moment — the point that we’re releasing someone from an institution, is such a crowded moment in people’s lives, that what we need to do to move up to it is not only understand the health problem they’re dealing with, but where are they going to live while they face that health problem? So, we’ve been able to help clinical staff really grow in their understanding of how to interact with patients.

And then, the last thing is, I think we’re going to be able to make some changes in the health IT resources that are made available to people. So, where 20 years ago we used to put business machines in people’s bedrooms and say, “Well, use this to look things up that will be important to you.” Now we’re beginning to understand that the ability to have a smart phone that has a secure docking station may be way more important to an adolescent trying to manage diabetes than any number of clinical visits we could arrange for them.

So, if you think of the three-legged stool of health being the person’s own assets, the clinical knowledge, and technology being the third one, we’re now expanding that understanding of technology to be not only what kind of electronic health record do we need, but what kind of tool do we need to be able to give for the person to live their everyday life with it?

So these visits in the home give us a very rich view of what tools are available and what should technologies do to either support or fit into those home lives.

[09:58] Louise: Fascinating. I trained as an occupational therapist.

[10:00] Patti: Oh! Did you really?

[10:01] Louise: Yeah, and so you spend a lot of time in people’s homes if you’re an allied health professional, so my mind is racing, I think of all the things you should come back and talk to the OTs, I think, and the physios, too.

Patti starts interviewing Louise, who talks about her background in occupational therapy and how she came to HISA

[10:11] Patti: So how did you get from OT to HISA?

[10:13] Louise: Okay. Absolutely no plan.

[10:18] Patti: No plan, yeah.

[10:19] Louise: I’m studying occupational therapy, and for my very first prac experience — I think I had been studying OT for all of three months, and I go to a hospital, and they were giving me the opportunity to interview my first patient, and I’m nervous as anything, so I go in earlier so I can study her medical record, which was in paper, which was new to me, I thought that was surprising. Which, when was that? That was in 1997.

[10:41] Patti: Wow! Not that long ago, really.

[10:43] Louise: Not that long ago. Still paper, manila folders, it wasn’t even color-coded.

[10:46] Patti: Oh my gosh.

[10:47] Louise: So, I sat there, and after about 20 minutes I came out to my therapist, and I’m this A-type personality — I try to do really well in everything I do, and I felt like a failure. I was like, “I can’t even find the OT notes, and I’m really nervous, and I don’t think I’m going to…” and she goes, “Oh! I should have told you, honey, the OT notes, that’s a yellow sticker, so whenever you see a yellow sticker…”

[11:11] Patti: Oh, secret codes! [laughter]

[11:12] Louise: And I was like, “What?” I kept saying these things as I was a student, and it occurred to me early on — because you have to be a very bad occupational therapist to kill someone, right?

[11:24] Patti: Yeah, that’s true [laughter].

[11:25] Louise: You don’t usually make life or death decisions, of course nurses and doctors make them often, every single day, and as soon as I realised that that wasn’t an isolated incident, that healthcare effectively is still — I know there are pockets of much better innovation, but effectively, healthcare still runs on paper that is not organised, that is incredibly inefficient, but also quite dangerous. So, I was planning on working as an OT, but I was offered a three-month research assistant job in Telehealth.

[11:56] Patti: Oh, excellent!

[11:57] Louise: So I was like, “computers and technology and healthcare, fantastic!” And I’m from a country town, so I love that idea of equity of access, so I thought well, Telehealth can help there, and that’s it. I ended up, there you go! People kept offering me things, and I ended up doing a PhD, and then, long story short, I did a PhD and I handed it in, came to the HIC conference, because I had already become a member of HISA, and came to the HIC conference, the CEO resigned that year, and a few people said to me, “Oh, are you going to apply for the job?” And I was like, “Yeah, right!” It was not on my plan, at all, and also I didn’t think I was actually qualified to take on that role. I used to always work as a consultant and for myself, effectively, had no experience at managing people and things, but I was encouraged by a few people to apply, and so I did. It was a competitive process, but they hired me, and that was almost seven years ago

[12:52] Patti: Wow!

[12:53] Louise: So, there you go.

[13:54] Patti: This is great. So what’s the most important skill set for a CEO?

[12:58] Louise: People skills.

[12:59] Patti: People skills.

[13:00] Louise: Yeah, it really is. Whether you’re managing your staff, or whether you’re managing relationships — and especially for an organisation like HISA, I find, because we’re member-led. We have over a thousand members, effectively, I work for a thousand-odd people, and every single one of them has a right — and they often do, and I encourage them — which is to say, “Hi Louise, I think we could do this better,” or “there’s a real need to do this, could HISA do something?” And my default answer, I think, is always, “Yes, actually, we should help you. That’s why we’re here, that’s why I’m here. Let me see how I can make that happen.” So, I felt that I’d probably do it for two years — and I get bored pretty easily, so I was like, “and then I’ll move on,” and I don’t have a plan for what happens after HISA, either.

Louise talks about what she believes is the most important skill set for a CEO and the importance of strategic thinking, (as well as passion!) in her role

[13:47] Patti: Well, you have to have a plan to run an organisation this big and this complex, so tell me a little bit about the strategic thinking, and how does that fit in to what you do?

[13:56] Louise: Probably similar to you. I think a lot of us in health informatics are quite quick, fast thinkers, and you have to think on your feet a lot, so you have to be really agile. I often think that running as a non-profit, especially one that is resource-constrained, because we keep growing — we’ve tripled in size since I’ve been CEO.

[14:18] Patti: Fabulous!

[14:19] Louise: But I keep spending all the money — the treasurer doesn’t like that.

[14:21] Patti: Of course.

[14:23] Louise: But, that’s my job as well, I think, is to grow the organisation responsibly, because we’re not here to have a high bank account. We’re here to deliver services to members and to help bring people like you, and thousands of people together. The strategic thinking — I think I could go and work for an organisation that wasn’t in health care, and apply some of the things, but I wouldn’t love it as much. I know it would be an unusual answer, I think, to your question, but I think that strategic thinking comes from the passion, and understanding the environment that you’re in.

In my own work, the passion drives the vision, the vision drives the strategy.

[14:56] Patti: Well, I would agree that, in my own work, the passion drives the vision, the vision drives the strategy, so yes, I can see that. I’ll explain why I’m interviewing you.

[15:07] Louise: Yeah, this is cool, this is fun.

[15:09] Patti: Let me ask you this: Is this a full-time position?

[15:11] Louise: It is.

[15:12] Patti: Should it be?

[15:14] Louise: It’s actually three full-time positions [laughter].

Patti discusses her interests in how women develop careers and in female leaders supporting other women

[15:16] Patti: It’s three full-time positions in one. So, one of the things I’m particularly interested in is how women develop careers over time, and what we do, and how we do that, and how we factor in constraints, and I’m particularly interested in two groups of women. One of the women between 35 and 45 who are looking for meaningful, professional work, but want to work part-time, and this is something that I try to, in my own organisation, where possible, make positions that could be part-time positions. I think you get such amazing productivity out of people that are able to come, bring their brain power in, do their work, and then leave in the 20-hours. Go home and be with their kids after school, and be able to have a flexible day, one day a week not coming in. I think it’s really incumbent among women leaders to think about how do we make not just family-friendly policies, but meaningful work for people in all levels of investment. The other reason I’m really interested in this is because I’m moving from a position that has a paradox of being completely unstructured, and yet very well-constrained, and that is a university faculty member. Over the last 30 years I’ve been able to do whatever kind of research I want to, I put together new teams, I break them apart, we start new initiatives.

Patti talks about funding or, “How to get money for dreams!”, anticipating trends, and continues discussion on women in the workplace

[16:38] Louise: But you have to get funding.

[16:39] Patti: But I have to get funding for them, but

My father used to work for the Catholic missions, so I learned very early on how to get money for dreams. I know how to do this.

[16:47] Louise: How to get money for dreams!

[16:50] Patti: That has shaped my research, so my group has had over $30 million of research funds. We’ve been able to support everything from understanding how the practice in a nursing home, or long-term facility, can fit with the care needs of the residents better, to creating a virtual reality cave, so we can study every home environment in the world. Part of that is selling your dreams to other people, part of that is being sure about what’s worth investing in, sensing the next trend, where you’re going to go. If you’ve been able to triple the size of an organisation, you’re sensing trends. So, the other part of my focus on women in the workplace that I’m really very interested in and why your career path interests me a lot, is

How do we help women make what looks like a zig-zag pathway through careers make sense, and leveraging the talents you know in one area to develop in a new space?

So, I’m going into a position now that I had never anticipated going into, and it’s the Director of the National Library. I’ll be leading a staff of 1,800 people, a half a billion dollar a year budget, and at the same time, I will need to understand the range of information from our national network of libraries of medicine — it’s 6500 around the United States, provide health information in the community to people who need it, lay people as well as professionals, up to emerging data science, genomic precision medicine, and how we build the proper data stores so we’re able to leverage and really understand what this genome is. So, it’s a wide range of skills that are needed, and yet many of them, I feel I have a core starting point, at least. I know I’ll have to develop new ones, but the idea of looking across one’s career and figuring out, “What did I learn here that takes me in, or lets me take the next step into work?” I would say out of my academic work, as a medical informaticist, I would take three things from this. The medical informatics community worldwide is incredibly peer-supportive. It’s the most amazing community. I talk to other people in other disciplines — cardiovascular care or primary care — and they never speak of their professional societies the way we do, and I don’t know what’s so special about it. I don’t know how it got to be this way, but I think it’s very clear from early on…

Louise and Patti discuss passion, the peer-supportive medical informatics community and redefining health and technology

[19:08] Louise: I think it’s passion, don’t you?

[19:09] Patti: Well, maybe it’s because it’s a new area, nobody understands [laughter]…

[19:14] Louise: No one understands what we do, so for God’s sake, we should at least stick together [laughter]!

[19:18] Patti: But I see senior people reaching out to junior people. There are people I’m seeing here at HISA who knew me 25, 30 years ago, who I saw at HISA, who are saying, “how’s your family? What’s going on in your work?” So there’s a sense of being present to others. The men and women that I knew when I was coming out of school that gave me the first entrée, or encouraged me to be on a panel, or asked me to write a book chapter for their book, really gave me a pathway in. I also think that our field requires constant re-conceptualising of what is health, what is technology, and how do they fit together? The technology we started with when I was first in this field are obsolete now — they don’t exist. Well, I guess some of them do, some of those big, old machines do.

[20:04] Louise: Oh, we still have fax machines.

[20:05] Patti: Yeah, okay, we still have fax machines around.

[20:07] Louise: This is healthcare.

We have to be ready for healthcare that is defined not at a biological or chemical level, the way we originally thought of it, but as a social level.

[20:09] Patti: We have to be ready for virtual reality and for the oculus rift, and also have to be ready for healthcare that is defined not at a biological or chemical level, the way we originally thought of it, but as a social level, as being tempered, perhaps. The right treatment isn’t necessarily the one that targets the pathology best, it might be the one that fits into the patient’s life the best. So, our community has required us to constantly be thinking in new ways, and that requires us to build information tools for a health care future that we can’t really see right now.

[20:41] Louise: Yep.

Louise and Patti discuss student support and encouraging future generations in the informatics community

[20:42] Patti: The other part that’s really terrific about our field — and I have to say this about being here at HISA — the attention to students is phenomenal. I look at the student awardees whose papers are listed in the program, that they’re a finalist for a particular award, and this is an amazing statement. It brings the students into a level of credibility that I think is really important for their careers, but it also brings them into a level of acknowledgement, and I just think it’s fabulous.

[21:09] Louise: Oh, thank you. It is really important.

[21:11] Patti: Yeah, it’s great.

[21:13] Louise: They’re the future generations, and I think we need more. We just had a board meeting, actually the AGM, it was at lunchtime, just before this interview started, and we had somebody nominate herself for a board, and nobody knows her. She’s a relatively young clinician.

[21:30] Patti: That’s great.

[21:31] Louise: She was speaking yesterday afternoon in the program, and until six months ago, I didn’t know who she was. She works across the road from me.

[21:39] Patti: Oh, interesting.

[21:40] Louise: Yeah, so again, how do things happen? How do you get opportunities? A young doctor, she was not involved in the health informatics community at all, but she saw that we were running a health conference, attended as a delegate. There’s probably about 200 people at that conference, it’s a smaller one, and my staff were the ones who said, “Oh my god, have you met her? She is incredible.” Actually, no I haven’t, and they said, “She’s incredible. I’ve actually got a girl crush on her,” was actually something that one of my staff said — one of my female staff. She said, “She is amazing,” so I sourced her out, and we just had a chat, and yep, she was really impressive straight away, and so she became a HISA member on her own esteem. She loved what she saw, and I think I’m putting words in her mouth, but I think if it’s like me, she felt a connection — it’s like, “They’re my people, this is it.” So, she’s nominated for the board, and relatively new to HISA, and the members who voted, and I think around 150 people voted, voted her in.

[22:40] Patti: Good for her, that’s great news!

[22:40] Louise: So, she’s on the board now.

[22:41] Patti: That’s great. We must be on similar cycles with our associations, because the phone call that I had this morning was with the nominating committee for the AMIA Health Care board.

[22:52] Louise: Oh, cool.

[22:52] Patti: We were having the same conversation. We had people who self-nominated, and we would go around the nominating hall, “Do you know this person? Have you met this person?” And we had three people who self-nominated, who no one had a history with, which suggests to me that people feel like the organisation is a place where they can exercise leadership, they can have an influence, and there isn’t a closed group of people who are controlling everything. So that may be another thing that makes our field interesting.

[23:18] Louise: Isn’t that fantastic? I love that.

Patti and Louise discuss how technology can help people take care of themselves and the importance of talking about what they do to people outside of the healthcare industry in a relatable manner

[23:20] Patti: So you were speaking about passion a few minutes ago. I have been very blessed. I have had many outlets to talk about the way technology can help people take care of themselves. I used to say it from the perspective of, “The healthcare system is overburdened and isn’t doing what it needs to do for people, so we need to do this.” I don’t say that anymore. What I say is, “There are things that people can only do for themselves, someone else can’t do it for them, and they aren’t necessarily understood from the clinical realm, so being able to build tools and engage people with soft management has been really important.”

I take every opportunity I can to help people get comfortable with those words that I use: citizen right, engagement, technology in the hands of patients, technology-enabled care.

Our field, we kind of like our specialised knowledge a little bit, and we like to sometimes privilege the professional. So, the opportunity to speak here has been a tremendous gift to me — to be able to talk to another group about what is important about citizen engagement, about being able to think about health beyond health care, about understanding the balance of roles between professional-public health and personal self-management, but I hadn’t expected, until I came over and started to meet with the nursing informatics group and with some of the delegates here, that the country is at an amazing point right now, because you can avoid some of the congealing around major clinical systems that lock a hospital down into thinking in one way by coming into investments in health IT at a point where there’s better tools available for people. I hope I was able to push a little bit of the thinking to say, “Before you sign that contract, think about what does it mean to reach the people you’re responsible for, and how are you going to incorporate the range of people, whether it’s long-term residents, immigrants, first nation’s people, into a system that needs to be dynamic and responsive to them.”

[25:23] Louise: Yeah, absolutely, and one of the things that we’ve tried to do here, and we have done it at this conference, and we have done it at others, is to really profile the consumer stories, as well.

[25:31] Patti: Yes.

[25:32] Louise: Sometimes I think people who are new to the field, and especially if you tell someone you’re in health informatics — or in America we call it medical informatics of course, but it’s the same thing — you know, taxi drivers, or whatever, and then I describe it, and I’m like, “Well, healthcare sort of runs on paper, and we think it’s a better idea if it actually ran on computerised systems,” and people are always shocked. In Australia we have 98% of G.P.s actually do have an electronic record for themselves, so people go to their G.P., and they see their G.P. type stuff into a computer. The majority of Australians actually expect, and have no reason to think otherwise, that all of that information is shared with the key people. I find it strange when you discuss what you’re doing in health informatics with people out of healthcare, because it’s hard to describe it in a sentence.

[26:25] Patti: Right.

[26:26] Louise: You need to encompass a narrative that they can relate to, and I think that patient journey is really important, because one of the key tenants of health informatics, of course, with a socio-technical lens of how we look at things is actually, whatever we do, it’s about improving things for the patient or consumers, improving health outcomes, and improving things for clinicians as well. It’s not about computerisation for computer’s sake.

[26:50] Patti: Right.

[26:51] Louise: Would you agree?

[26:51] Patti: Once in a while the tools are fun.

[26:52] Louise: The tools are fun, oh yeah, and they’re cool, but they enable the outcomes that we’re looking for. Would you agree?

Patti talks about the pressure institutions face in making good investments and the possible conflict between patient safety and sufficient care, and meaningful, personalised care

[26:58] Patti: I think you’re quite a bit ahead of us in privileging that patient voice. That’s something that we have on occasion have had challenges — I can remember the first time we brought Dave deBronkart, who I know visited you last year, to an AMIA meeting and somebody wondered who was going to pay for his registration [laughter] and it was a conversation that we needed to sort of think through, and I understand that associations run on a certain income, I get the business model, but at the same time, it does bring us to an interesting question. We were actually asking him to teach us, and so we shouldn’t make him pay for the privilege of teaching us. I think organisations like HISA have a really special role right now to help institutions understand how to make a good investment, because I think there’s enormous pressure for patient safety and making sure the care is sufficient, and sometimes that conflicts with care that is meaningful and tailored and personalised. The number of your clinical informatics executives, or CIOs, that I’ve talked to here, has been really impressive, because to me, that’s an audience that’s really important to reach in terms of understanding that the information decisions, or the information investments have to somehow balance operations and clinical care. It’s not possible to do both equally well, so there always has to be an understanding of what point are the trade-offs acceptable and what point are they not acceptable.

[28:36] Louise: Yeah, that’s right. It is a shame that we have to have those conversations at all, but human beings are complex animals, aren’t we.

[28:45] Patti: Yes.

Patti talks about her journey from nursing to industrial engineering and how industrial engineering and psychiatric nursing relate to one another

[28:46] Louise: I’m loving this — we could for hours, clearly. So, you introduced yourself — let’s go back to the beginning.

[28:52] Patti: Okay.

[28:53] Louise: So industrial design.

[28:54] Patti: Industrial engineering.

[28:55] Louise: Industrial engineering and nursing. Which came first?

[28:58] Patti: Nursing.

[28:58] Louise: Nursing came first?

[28:59] Patti: Yes, very much so. You spoke about your own journey. In 1975, I was going to be a critical care shock trauma nurse in ICUs, and this is way back when we were just starting to do open heart surgeries, which we don’t even do anymore. It was a different time, but I knew that was only a temporary position, because my deep passion was psychiatric nursing, but in the U.S. you need to do Master’s training before you can do that, so I needed something that would get me started so I could support myself while I was going to school. About a month before I finished my undergraduate degree, I read an article by a woman named Margo Cook, who was a very famous nurse leader early in the health informatics communities in the U.S., about computers in nursing, and I thought, “Oh! That’s what I want to do.”

[29:52] Louise: Hang on — why?

[29:53] Patti: Early on, in ’75, and it just made perfect sense. Along the way, I still had this passion of wanting to ultimately move out of technical-based care into psychiatric care, and yet when I went to do my Master’s degree in psychiatric nursing, I got deeper into computation because we started working with, at the time, early simulators for research purposes, and so the message was there, and the calling was there. But, at the same time, this was back in 1980, the Harrogate Conference and Medical Informatics Worldwide had only just happened a year before. I really did not understand how new this field was, and at the time, I had the privilege of meeting a guy named Peter Keen, who wrote a book on decision support systems in 1980, as if they were there, and we just had to learn to study them. I decided I was going to go to school and I was going to build decision support systems for nursing practice. It took me probably five years to realise they didn’t exist, nobody knew how to build them. As I was looking for graduate schools to go to, I worked with a nurse mentor that I knew quite well, thinking I would get a PhD in nursing and take a few technical courses along the way. In my conversations with her, and my own understanding of myself, I was truly very interested in learning the technology in a deeper way. She connected me to different groups so I could think about how I wanted to study decision making from a behavioral approach in psychology, from an engineering — which is a prescriptive approach, or from a business model, so I ended up in industrial engineering, because it was the best place to study decision making. I’ve been an academic my whole career, and that has special privileges and special problems. I’ve never done an implementation of a major system, and sometimes I have to be really careful — some of the things that I say are very naive, but at the same time, I’ve been able to really use the time as an academic to think about, “how do we build systems for 15 to 20 years from now?” Not for today, but for the future, and so that’s where a lot of my focus on consumer information and technology in the home has come from.

[32:19] Louise: Excellent. You decided you were going to be a nurse.

[32:15] Patti: Yeah.

[32:16] Louise: It was going to be the psychiatric nursing, even then? So, it was a real surprise to have a pivot into industrial engineering.

[32:25] Patti: Well, not really, because it’s two things. One of them is that industrial engineering and nursing are quite similar, so there’s a fundamental philosophy in nursing that comes from Virginia Henderson, who was British-trained and then moved to the U.S. Virginia Henderson wrote this beautiful textbook on nursing, and her basic definition was that nursing does for others what they could or would do for themselves if they had the skill or the ability or the strength. So, her model of nursing was very much support another, but no more than they needed, and doing what they wanted. This idea of, “I’m bringing technologies to support a person functioning better,” beautiful model, terrific way, and it’s wonderful guidance for psychiatric nursing, and industrial engineering is the same thing. Industrial engineering is the proper mix of technology, materials, and people, and it is a fundamental principle of industrial engineering that you don’t overuse any one of those resources.

[33:24] Louise: Yeah.

[33:25] Patti: So you don’t do more for a person than they can do for themselves. You build tools that fit into people’s hands, or you describe informational systems that provide computational support for something that needs to be done. So, it actually seems quite similar, and oddly enough, at one time — and I don’t know if this is still true now — about a third of the nurses that would define themselves as nursing informatics specialists had psychiatric nursing backgrounds.

[33:47] Louise: Really!

[33:48] Patti: I think it has to do with information processing and having to persuade people to act in a way that we need them to [laughter].

[33:55] Louise: Whatever works.

[33:56] Patti: Yeah, whatever works.

Patti talks about her academic career and academic research

[33:58] Louise: The academic component of your career as well, because you said you’ve always been an academic, again, when you were an undergraduate nurse, were you ever thinking you would…

[34:04] Patti: No! I never thought I was going to be getting a PhD at all.

[34:13] Louise: Clearly, to have the career you have already, and you’re still going, you need a really inquisitive mind, and a mind that’s not actually interested in saying, “Oh, that’s that status quo, that’s just how it is. I’ve got a lot of questions. I want to find out why does that happen? How can we change it?” So, when did you realise that academic research is something?

There’s a point you begin to realise, that as a nurse, you’re affecting five, six, ten people a day, and as an educator you might be affecting 30 people at a time, but as a systems designer and a systems implementer, you’re affecting thousands of people at a time.

[34:34] Patti: Well, I wanted to tell you two things, but first I wanted to remind you that there was a comment Brittany said this morning in her talk, that there’s a point you begin to realise, that as a nurse, you’re affecting five, six, ten people a day, and as an educator you might be affecting 30 people at a time, but as a systems designer and a systems implementer, you’re affecting thousands of people at a time. So, there was this desire to have a broader scope of impact, that I think really got me to think about information technology as a strategy for doing that. At the same time, I would say that the realisation after I finished getting my Master’s in nursing, that I could spend two more years getting an MBA, or three and a half or four years getting a PhD, the independence that came from having a PhD was what I was really after.

[35:29] Louise: Right.

[35:30] Patti: I can’t say I ever started off thinking I wanted to teaching undergraduate engineering and economy, which I’ve taught, or the skills course for the sophomore nursing course, because as an academic, you have to teach in a range of areas, as well as your specialty. What I really wanted was the ability to ask and answer my own questions. That’s what I got.

Patti talks about her new role and introduces us to the National Library of Medicine

[35:50] Louise: Okay, cool. Tell me about the new job. I’ll let you explain it, but I’m assuming most of the audience for this podcast will be Australians, although it will be online, so who knows.

[36:04] Patti: Well there you are, the world!

[36:05] Louise: Yeah. The world is the oyster! Let’s say it’s Australian and people haven’t heard of the National Library of Medicine. Would you like to just talk a little bit about what that organisation does, and then how you were attracted to apply for the role?

[36:17] Patti: Sure. The National Institute of Health, houses within it the National Library of Medicine. It has 20 other research institutes — National Cancer Institute, National Institute of Heart, Blood, and Lung — all these institutes have a dual mission: intermural or internal research that goes on at NIH, as well as external, supportive research around the country and around the world. The National Library of Medicine has a very special configuration; in that it is the repository of medical knowledge for the world. It was, at one time, a compilation of books. Frankly, it started in 1838 in an Army Hospital. There was a dentist who named himself the librarian.

[37:02] Louise: Interesting.

[37:03] Patti: Yeah. It was going to become the library of the Surgeon General, and so he made sure the resources were available for the Surgeon General prior to the Civil War in the U.S. 130 years later, the National Library of Medicine became, instead what was once part of our medical military facility, it became a part of our research facility — the National Institute of Health. So, now the National Library of Medicine exists in Bethesda on the major research campus. It’s a huge operation, 1,800 employees, many of them scientists who study everything from indexing to cognitive science to standards building, but also traditional library resources: curation, building a historical collection — we have a massive historical collection, and importantly, right now, the curation of data, so that as we move into a data science era, we have a trustable, safe, and secure place to store data. The National Library of Medicine has maybe — it’s uncountable right now — let’s say for the sake of discussion, maybe five million contacts a day, most of which are computer contacts, they’re not even people.

[38:13] Louise: You’d hope there’s not five million people calling you every day!

Patti talks about National Library of Medicine resources, such as MedPlus and the increasing importance of social determinants of healthcare

[38:15] Patti: Right! There are about two million people that use our resources every day, particularly MedPlus that are resources that are used by the lay public so that people can look up things and understand their health problems. The computer-to-computer use comes from laboratories who are trying to determine whether a particular strain of E.coli caused an infection in a person and was also found at the food board down at the grocery store, so looking at reference databases, electronically, is a big part of our service. Another big part of our service is to make sure that information is organised in a way. So, we all are familiar with Google rankings, and you put something in a search engine and the most common, the most popular, comes up first.

That’s a very useful way to understand how to retrieve information, but it’s also important to have a concept-based organisation: what constitutes medicine? What constitutes health-related data? And that’s where our indexing services — which is about 20% of our effort of the whole National Library of Medicine — goes into making sure that we have MedLine and the proper important terms attached to articles, so if people want to understand a particular health problem, they’re able to find related information in a systematic way. Now, the reason that I’m explaining this to you is because

One of the things that I want to do as I join that National Library of Medicine is just push the envelope a little bit and broaden the definition of health to not only include the biological and physical phenomenon that we see — cancer tumors or eyesight — but also, the social and behavioural domains of health, which are becoming increasingly important.

Where have you worked? What has your diet been for the last 30 years? Have you been exposed to violence? Have you been in the military? These are all factors that we know shape a person, and as we’re trying to map a genome to a phenotype, that is the genetic human structure, we need to know more about that human structure than just what organs are in the body.

[40:08] Louise: Absolutely. The social determinants of health care are so critically important. Even if that was the only thing you achieved — and it won’t be — even if that was the only thing, that’s massive!

[40:19] Patti: It’s really exciting.

[40:21] Louise: It’s very exciting. So, that’s day one. What’s day two?

Patti talks about leading the strategic planning process and collaborating with stakeholders, as well as thinking about new ways of incorporating personalised information into people’s everyday lives

[40:24] Patti: On day two, I’m going to lead a strategic planning process, because the Patti Brennan view of what the National Institute of Medicine should be is necessary, but not sufficient for the future. What we need is to work with our stakeholders — to understand from our clinicians, our researchers around the world, and in the U.S., the citizens: what do you want the library to produce for you, and how do you want it to deliver it to you? So, should we be using all text? We still have our most common way of communicating with people, is by journal articles, and by magazine articles and websites with words on them, but maybe we should be building television shows, or animations, or maybe we should be thinking about new ways to extend information into people’s everyday lives so we can link the shelves in the food store with a data storage, so immediately nutrition information would be available for individuals. So, we think of the Pokemon Go craze right now — imagine if you held your smart phone up in front of a box of cereal, or a particular menu item in a restaurant, and could see not only the item, but a nutritional breakdown of that item superimposed on the screen.

[41:33] Louise: And, if it was linked to you, so I would see something different to you.

[41:37] Patti: So, if I was allergic to peanuts, it would start flashing red and say, “you shouldn’t eat this.” Or, if I’m trying to lose weight and have already had cake today, it will black out the screen and not let me have cake. So, this idea of personalised medicine requires personalised information, and it’s going to require new tools to deliver it.

[41:55] Louise: Yes, and then using augmented reality as the vehicle for that. I love it.

[41:58] Patti: Yeah, exactly. So, it’s going to be a really interesting time. When I go to the National Library of Medicine, I will have largely administrative responsibilities, and I have a wonderful operational group to move into. It’s really in fantastic shape, but I’m also going to have about half a day to be able to do my own research…

[42:16] Louise: Oh, you are? Good.

Patti and Louise talk more about Patti’s research interests

[42:17] Patti: …on consumer information. As is typical with our structures at NIH, you can’t have your research laboratory in your own institute, because then you would be reporting to yourself. So, my research laboratory will be in the National Institute of Nursing Research.

[42:31] Louise: Oh, great. Oh, this is so good.

[42:32] Patti: This is going to work out great, I’m really excited about it.

Patti and Louise discuss Patti’s journey to NLM, why she chose to apply for the Director of the National Library of Medicine, her interview and her plans for the next 18-months

[42:33] Louise: Podcast people, you should see the smile on Patti Brennan’s face right now, and me, because I’m just completely in love with her, of course. That’s just so good, I’m so pleased that they chose you. They’re pretty smart people to put you on the list, because I believe your predecessor also was there for what? 30 years?

[42:52] Patti: 30 years. Well, you might remember you were around as this whole conversation was unfolding in Brazil last year at MedInfo.

[42:56] Louise: I was.

[42:57] Patti: People approached me when the position was announced, when we were at the MedInfo meeting, that is was open. They were soliciting applicants for it, and people came to me very nicely and said, “You ought to apply for this,” and I thought, “I’m going to retire, I don’t need that!” I had plans to retire in August of ’16, I have other things I want to do. I’m passionate about safe housing and homelessness, and I was going to devote the next phase of my life to really working to end homelessness, and over the fall I would get calls from the search committee and I would say, “No, I’m not interested. I’m going to retire,” and then I’d get another call. Finally, someone said, “Well, could we have this person talk to you? People have recommended you,” and I said, “Most certainly,” and I’m thinking there’s never been a woman appointed to this position since 1838.

[43:48] Louise: 1838!

[43:49] Patti: There’s been 19 Directors to the National Library of Medicine, they’ve all been men, and they’ve all been physicians. So, I thought, “Why would I take my time to apply for this position that’s clearly a guy job for a doctor?” I went through the process initially, and thought about it, and thought, “Okay, I have some ideas about expanding the definition of health, so we know that the phenome is more than the organ, I think this would be good.” So I did make the application, and I had a screening interview in December. Now, if I could take a minute…

[44:27] Louise: Please.

[44:28] Patti: You could cut this out if it doesn’t make any sense, but it’s the crowning nadir of my career. I’m very excited. I was invited as one of the eight or ten people that they wanted to pass through the first round. I have no idea how many applicants they actually had, but I was very excited to go, and I went to Washington, and the meeting was going to be only 45 minutes, with a committee of 15 people, many of them other Directors of the other National Institutes, like the Director of Heart, Lung, and Blood or the Biomedical Engineering Institute. The NIH is huge, there’s 80 buildings on it, so it’s gigantic, a really big college campus, and I figured out where I was supposed to go, and I went to that building, and it was the wrong building. I couldn’t find it, and I was so proud of myself, I was 20 minutes early, I knew I just had to walk in and go up to the second floor, B20, and I couldn’t find the room and I was getting more and more panicked. I finally asked someone in the hall, I said, “I need to find this room,” and the guy takes me over to the window and says, “Do you see that white building over there? About a half mile away? That’s where you’re supposed to be.” And I thought, “The most important interview of my life, and I’ve messed it up.” I can remember the feeling, standing at the window thinking, “Oh my God, this is so bad,” and so I, in high heels, ran across the campus, was 15 minutes late for a 45-minute interview, and they cut it off at 45 minutes. So we only talked for a half an hour.

[46:03] Louise: Yep.

[46:04] Patti: Oh, I thought, well, that was the end of that part, but I had a nice dress for the day. So, over time, the conversations went on, through the spring. I became more interested in the job; the complexity of the job also became more apparent to me, so the idea that I’m coming into an opportunity where we’re at the cross-roads: intense data science, expanded consumer awareness, and these come together in the National Library. So, my work for the first 18-months will be to work the strategic planning process, and I will be making recommendations to our Board of Regents who will be the actual group that carries out the strategic plan, and working to understand everything from what do we need on mars, to what do we need in South Manhattan?

[46:54] Louise: Oh, wow, you’re going to have a busy few years!

[46:57] Patti: I think so, but I’m not staying for 30 years.

[47:01] Louise: No, okay, alright, there you go, you heard it first: She will not be staying for 30 years.

[47:04] Patti: I’m not staying for 30 years.

[47:05] Louise: Yeah, well and your next passion to solve homelessness, that can just wait for a few years.

Patti talks about her other passion- homelessness, and expanding the definition of health

[47:12] Patti: Well, I did two things, and this goes back to our conversation about women and their careers. I worked in the city of Madison on safe-housing for 20 years, and I’ve built up relationships, and I work at the shelters, and I think I have some pretty cool ideas about what to do. As it became clear that I had to give that up to take this job, it was probably one of the hardest things for me to give up, because I can’t imagine not being able to have safe housing, and everything else follows from that, so I started to enlist other people in the interest area, so I built up a group of people who are going to take these ideas forward.

[47:51] Louise: Oh, great!

[47:52] Patti: So I’m really excited about that. The other thing is,

I really started to realise if I can expand the definition of health in our literature to include social and behavioural domains, I will be able to help clinicians better understand how housing contributes to health, I’ll be able to help policy makers understand how investments in housing are partially and investment in health, so I think I’m going to be able to do something.

[48:17] Louise: Yeah, and evidence-based policies is what we need.

[48:18] Patti: Yes, evidence-based policies, exactly.

[48:20] Louise: Again, if you’re not in this space, as an everyday person, you’d like to assume that that actually does happen now, and that’s not the case.

[48:30] Patti: Not exactly.

[48:31] Louise: Well, it’s been a pleasure chatting to you now, Patti, and clearly we could talk forever, but we’re already way over time, but no one’s knocked on the door and said we had to leave, so let’s just keep chatting. But look, I want to ask you one final question.

[48:43] Patti: Alright.

Patti gives advice to people thinking about getting involved in this field

[48:44] Louise: So if someone is listening to this podcast now, someone who is still unsure about nursing informatics or health informatics and just thinking of, “Maybe I should put my toe in the water…” What advice would you give to people involved in this field?

So if someone isn’t sure that they should be in the field, they need to look around at what they’re trying to do, and figure out if the challenge is getting information at the right place to do something, they should come to this field, because that is fundamentally what we do: ensuring the right information is at the right place.

If they’re already realised that, and particularly if they’re a clinician and they’re thinking, “How do I break in? How do I get started?” I would encourage them first to come to a meeting like HISA, like the AMIA meeting, to meet the people and talk to people, and listen to the papers, and see what people are thinking about, and look at our vendors and see what the industry’s like, because at our National Association meetings, you get the best, broadest view of what our field does, and through those conversations, someone may sort out that what they’re really interested in is the analytics underlying the data, or maybe it’s the screen presentation of the analytic information, so they can sort that out, and from there look into opportunities for either self-study, or developing education, or even formal study.


Closing remarks

[50:01] Louise: Great. Okay, well, that’s excellent advice. You heard it there first, people. Do as Patti Brennan says, she’s a very important person. [laughter] Thank you very much for your time, thanks for joining us on Dissecting Digital Health, and maybe we’ll get you back!

[50:11] Patti: In 22 years?

[50:17] Louise: No, no. I’m thinking maybe we can do a podcast a year into the job.

[50:21] Patti: Oh, that would be interesting, actually.

[50:23] Louise: Actually, I’m going to come to AMIA this year as well, so maybe I’ll talk to you and Doug and get a few podcasts.

[50:29] Patti: Oh, that would be great.

[50:31] Louise: We can catch up and see where you’re at.

[50:32] Patti: That’ll be terrific. Thanks so much.

[50:33] Louise: Thanks.

[50:33] Patti: Bye-bye now.

Panelists at HIC 2016 — Dr Monica Trujillo, Dr Wen Dombrowski, Dr Enrico Coiera, Dr Louise Schaper (facilitator), Dr David Hansen, Dr Patti Brennan

Contact Us

Suggest a guest via dissectingdigitalhealth‘AT’gmail.com
Want to learn more about digital health and health informatics — join HISA: Australia’s Digital Health Community www.hisa.org.au

Dr Louise Schaper, PhD

Written by

On a mission to fix healthcare. CEO @HISA_news. Advocating, supporting and fostering the digital health ecosystem in Australia. Yes, I do have the coolest job!

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