Please Join Me in Thanking our NLM Veterans

Every year at this time, I take advantage of Musings from the Mezzanine to share with you some of the things for which I am thankful. In my 2020 blog, I reflected on how far we’ve come together since I joined the NLM in 2016. In my 2019 blog, I mused about the people, professionals, and personnel for whom I give thanks. This year, I want to give thanks for all veterans in the United States, but particularly for those NLM staff members who are also veterans.

There’s an official legal definition of a veteran – according to Title 38 United States Code, a veteran is a person who served in the active military, naval, or air service, and who was discharged or released under conditions other than dishonorable. Also included as veterans under certain circumstances are National Guard members and members of the uniformed services such as the Public Health Service.

Left to right: My grandfather, Michael Flatley, and my father, Thomas Michael Flatley.

I come from a strong veteran family – my dad, my uncles Bill and Ed (who were military chaplains in WWII and Vietnam, respectively), my cousin Joey, and my nephew Chris.

At NLM, we are fortunate to count many veterans among our numbers. Some of our staff are not only veterans of active-duty service, but they also continue to serve through the reserves or through membership in the National Guard.

It’s good for NLM to have veterans among our workforce. Veterans bring well-developed skills that can effectively be applied to our operations and research enterprise. While each veteran is unique, and entered uniformed service for very personal reasons, veterans bring a commitment to the country refined through their assignments. And veterans strengthen NLM’s commitment to serve the public through government service.

I think that working at NLM is also good for our veterans. NLM allows them to continue in public service and provides them with a world class enterprise environment that makes effective use of their talents and skills honed through previous service. And working at NLM enjoins the efforts of these veterans with the remaining 1,600 plus people who work every day to bring information to the public, make genomic information safely and securely available for science and public health, and help reach communities across the country with trusted health information.

I am pleased and proud to honor these select members of our outstanding workforce. Thank you for your military service and thank you for your continued service at NLM!

Clockwise from top left:  Dianna Adams (U.S. Army), Alvin Stockdale (U.S. Army), Velvet Abercrumbie (U.S. Navy), Ken Koyle (U.S. Army)
Clockwise from top left: Dianne Babski (U.S. Army), Kevin Gates (U.S. Air Force), Bryant Pegram (U.S. Army)
Left to right: Todd Danielson (U.S. Army) and Peter Seibert (U.S. Army)

Remembering Donald A. B. Lindberg, a visionary giant with a personal touch

Along with the 1,700 women and men of the National Library of Medicine (NLM), I am saddened at the death of Donald A. B. Lindberg, M.D. (September 21, 1933-August 17, 2019), director of the NLM for more than 30 years.  

A world-renowned leader in applying computers to health care and a giant in the field of biomedical research, he was hailed for his visionary and transformative leadership. When people talk about people with such great influence, they often say that those who come after them stand on their shoulders. With Don, it was different. He made sure that we stood beside him.  

Like many of you, I believe I had a relationship with Don that had nothing to do with me as a person, but everything to do with the personhood of “DABL.” Don had a way of making each of us feel chosen to be in his orbit and making you feel as if he singled you out as a winner—and he thought we all were winners!

Throughout the years, Don reinforced the feeling that I stood beside a giant, not on his shoulders.

Let me share a few memories that illustrate this point.

In the mid-1990s, Don recognized the importance of the patient as part of the health information ecosystem. He realized that changing the health care system couldn’t only be the job of health professionals, but that patient engagement was key and that it involved many disciplines, so he created committees to guide NLM’s long range planning efforts. He made sure that young people like me, who had strong research programs to address patient engagement, were part of the process.

In 2002, as I launched my sabbatical at NLM, Don and his wife, Mary, invited me and my son, Conor, to their home. I can still picture Don and my then-nine-year-old son splashing in their pool. The Lindbergs took the time to share their home with me, a kindness that my son and I will never forget.

When I became NLM director in August 2016, Don and Mary hosted a lovely party for me. They introduced me to so many people important to the Library with whom I wouldn’t have met so early in my tenure. Their warm welcome made me feel anointed as a person of importance to them and as a part of the next generation of NLM.

And as I prepared to attend my first Friends of the National Library of Medicine gala later that year, I told Don that I was looking forward to seeing him. His response was that he wouldn’t be attending; He said, “This is your time to shine. I will come back next year.” And so, he did—to the gala and to lectures, celebrations, and many professional events. He and his wife remained a strong presence in the life of the Library. Mary was not only Don’s wife, she was a hospice volunteer and a strong advocate in her own right.

Don left his legacy in so many ways, including the annual Donald A.B. Lindberg and Donald West King Lecture to be held September 11 at NLM. Edward Feigenbaum, a pioneer in the development of expert systems in artificial intelligence (AI) and in demonstrating its technological significance, will be speaking. I’d like to think Don would be pleased.  

As I sit in the same office where Don worked, I pledge to take forward the integrity and commitment that Don demonstrated in leading this great institution. It’s not only what he would want, it’s what he would expect.

Dr. Donald Lindberg with grandson, Martin, in his NLM office.
Dr. Donald Lindberg with grandson, Martin, in his NLM office, ca. 1999.

Larry Weed’s Legacy and the Next Generation of Clinical Decision Support

Guest post by Lincoln Weed, son of the late Dr. Lawrence L. Weed and co-author with him of the book Medicine in Denial  and other publications. Dr. Weed, who died June 3, 2017, was the originator of “knowledge coupling” tools for clinical decision support and the problem-oriented medical record, including its problem list and SOAP note components.

“Patients are sitting on a treasure trove of data about their own medical conditions.”

My late father, Dr. Lawrence L. Weed (LLW), made this point the day before he died. He was talking about the lost wealth of neglected patient data—readily available, richly detailed data that too often go unidentified and unexamined. Why does that happen, and what can be done about it?

The risk of missed information

From the very outset of medical problem-solving, LLW argued, patients and practitioners face greater risk of loss and harm than they may realize. The risk arises as soon as a patient starts an internet search about a medical problem, or as soon as a practitioner starts questioning the patient about the problem (whether diagnostic or therapeutic).

This gap creates high risk that information crucial to solving the patient’s problem will be missed.

Ideally, these initial inquiries would somehow take into account the entire universe of collectible patient data and vast medical knowledge about what the data mean. But such thoroughness is more than the human mind can deliver.

This gap creates high risk that information crucial to solving the patient’s problem will be missed. And whatever information the mind does deliver is not recorded and harvested in a manner that permits organized feedback and continuous improvement.

Guidance tools set standard of care

The only secure way to proceed, LLW concluded, is to begin investigation of medical problems (the “initial workup”) using guidance tools external to the mind. These tools must couple patient-specific data with general knowledge as follows:

  • Link the initial data point (i.e., the patient’s presenting problem) with (1) medical knowledge about potentially relevant options and (2) readily available data for identifying those options (see the outer circle in the diagram below);
  • Link the data in (2), once collected, with the knowledge in (1) to show how well the data match up with the combinations of data points defining each relevant option—this matching indicates which options are worth considering for the individual (see the middle circle in the diagram below); and
  • Organize this information (data coupled with knowledge) into options and evidence—that is, diagnostic possibilities or therapeutic alternatives, the combined findings (positive, negative, or uncertain) on each alternative, and additional knowledge useful for assessing the best option to pursue (see the inner circle in the diagram below).

Three concentric circles showing (outside) potentially relevant options; (middle) options worth investigating; and (center) best options for this individual
For further explanation of the above diagram, see pp. 72-74 of the book Medicine in Denial.

Tools to carry out these steps would define best practices and make them enforceable as high standards of care for the initial workup (i.e., patient history, physical exam, and basic lab tests). That threshold task is pivotal. It lays the informational foundation for follow-up thought and action by the patient and practitioner. That foundation is also needed for feedback activities to and from third parties. (See the diagram on p. 13 of Medicine in Denial.)

Patient-driven tools

In carrying out the initial workup, the patient’s role is always central. The tools should enable patients to enter history data, which is often the most detailed component of the initial workup. Moreover, the patient necessarily participates in the physical exam conducted by the practitioner, and reviews history, physical, and lab findings with the practitioner.

Tools for the initial workup must thus be used by patients and practitioners jointly. But patients must be able to initiate use of the tools unilaterally. They can’t rely on practitioners to recognize when serious medical investigation is needed. Patients are the ones who experience symptoms—who notice changes from what feels normal. To investigate whether these symptoms might be medically significant, patients need web-based tools for problem-specific inquiries. So do healthy persons who may simply require periodic screening checkups for unidentified problems (plus initial workup of any problems discovered).

Overcoming the medical Tower of Babel

Whether it is patients or practitioners seeking guidance for the initial workup, traditional medical practice leaves them both in a vacuum. Once that vacuum was filled solely by practitioners’ idiosyncratic judgments. Now the vacuum is also being filled with a plethora of practice guidelines and clinical decision support tools, not to mention internet search engine tools.

But the very multiplicity of all these resources defeats the purpose of defining generally accepted, enforceable best practices for initial workups. And the multiplicity is increasing with new patient-generated health data from sensors, wearables, and smartphone-connected devices for physical exam data.  Moreover, the universe for needed guidance is expanding with vast new genomic/molecular data and knowledge.

The outcome of this multiplicity is not useful diversity but a Tower of Babel.

What we need instead are information tools with a unified design and trustworthy medical content, tools that guide users through the basic steps for inquiry into all medical problems, tools that take into account relevant information from all specialties without intellectual or financial biases. Users should not have to switch back and forth among different tools and interfaces for different medical problems, different specialties, different practice settings, different data types, different vendors, and different classes of users. The medical content captured in the tools must be problem-specific, but the tools’ basic design (see the three bullets above) should generalize to all problems in all contexts, as much as possible. This generality enables intuitive ease-of-use at the user level and powerful synergies at the software development level.

NLM’s role for the 21st century

LLW saw NLM as key to developing tools of this kind.

Drawing on its uniquely comprehensive electronic repository of medical content, NLM could create a new repository of distilled, structured knowledge. Drawing on its connections with the NIH research institutes and federal health agencies such as the CDC and FDA, NLM could rapidly incorporate new knowledge into that specialized repository. Outside parties and NLM itself could use that repository to build user-level tools with a unified design for conducting initial workups on specific medical problems.

Drawing on its uniquely comprehensive electronic repository of medical content, NLM could create a new repository of distilled, structured knowledge.

By enabling creation of such a knowledge infrastructure for the public, NLM would seize an “opportunity to modernize the conceptualization of a ‘library.’” Beyond its current electronic repository, NLM could be “demonstrating how information and knowledge can best be developed, assimilated, organized, applied, and disseminated in the 21st century.”  [NIH Advisory Committee to the Director, NLM Working Group, Final Report, p. 12 (June 11, 2015).]

This new infrastructure will encounter a barrier to its use—the medical practice status quo. Not all practitioners (or their overseers) will accept the data collection demands defined by the tool.

Patients at the center

Here we return to the central role of patients.

Patients who unilaterally use NLM tools to complete the history portion of the initial workup can then seek out practitioners who are willing (and permitted) to use the same tools for the physical exam and basic lab test portions. By creating demand for those innovative practitioners and using the tools jointly with them, patients can drive medical practice toward a foundational reform.

* * *

book cover for Medicine in Denial by Lawrence and Lincoln WeedReaders who have questions about the above are referred to the fuller discussion of these ideas in the book Medicine in Denial (PDF | published work), especially parts IV.E, F, and G, pages 192-194, and the diagram on page 13. The author also invites comments below.

Lincoln Weed, JD, Dr. Lawrence Weed’s son, practiced employee benefits law in Washington, DC for 26 years. He then joined a consulting firm where he specialized in health information privacy. He is now retired.

Remembering Judith Caruthers

Joining a new community with ties to my past

The threads of my life are coming together in unexpected ways.

As you read in last week’s post, I delivered the Leiter Lecture at the Medical Library Association’s annual meeting. I opened the lecture with a brief introduction to me—nurse, industrial engineer, consumer health information advocate, technologist. Sensing those in attendance needed to better understand my bona fides for serving as the NLM Director, I also spontaneously reflected aloud on my own graduate school experience and the librarians I knew then.

It was a fortuitous and meaningful tangent.

During my graduate studies at the University of Wisconsin-Madison, I hung out with librarians. And not just any librarians. These were some heavy hitters: Charley Seavey, Bob Martin, Wayne Wiegand, and the indomitable Judith Caruthers.  Judith, Charley, and I (and a few others) met in Frank Baker’s class on statistics in educational psychology. We bonded together to interpret regression coefficients, calculate variance explained, and absorb the mysteries and utilities of the general linear model. Beyond beers and homework sessions, we shared the philosophies and mysteries of our chosen disciplines: me from industrial engineering, Judith and Charley from library science, and Diana Pounder from educational administration.

Little did I know those Friday afternoons on the terrace were helping to form the basis upon which I would build a career leading the National Library of Medicine.

Judith came to graduate school as a grown up. She was already the research librarian for the Louisiana State University Medical Center in New Orleans and had taken a leave of absence to work on her doctorate.

To those of us waiting to start our careers, Judith was a sophisticate, and she taught me many things. Her dissertation exploring metadata in what was then known as ProCite introduced me to the systematic study of curation. She helped me to reason through how information engendered perspective and to see that the job of an information professional, whether librarian or engineer, was to preserve meaning and afford access. She also taught me to think of my career and my job as intertwined but never identical.

Judith and I became great friends, establishing a deep connection forged from mutual affection and compatible intellects. Judith taught me to eat crawfish, and I introduced her to Wisconsin brats. And every year, as the Mardi Gras krewes gathered in New Orleans, Judith oversaw the northern version of the king cake celebration, making sure her southern traditions warmed our Wisconsin winters.

Judith died in 2001 after a valiant battle with cancer. She left me before I was ready to let her go, and I think of her often—her gorgeous smile, her southern drawl, and her engulfing hugs.

So what a great surprise and gift it was to me that my spontaneous reminiscences at the start of the Leiter Lecture were greeted with tweets and hugs from members of the MLA community who also knew Judith—one of her LSU colleagues, a librarian whom Judith had guided to graduate school, another friend and colleague who worked with her.

I came away from the MLA meeting realizing not only have I encountered a new and vibrant professional community but also an amazing and welcome connection to my past. I can’t help but look forward to the tapestry created from the weaving of these long-connected threads.

Postscript: Judith’s good friend and LSU colleague Wilba Swearingen wrote more about her in a lovely tribute following her death.

Big Shoes to Fill

Joe Leiter and the lecture that bears his name

Last week I attended the Medical Library Association Annual Meeting in Seattle, where I gave the Joseph Leiter Lecture, one of the most prestigious named lectures in the medical library community.

Joe Leiter served as the National Library of Medicine’s first Associate Director for Library Operations from 1965 through 1983.  Joe, as he preferred to be called, was—like me—not a librarian. A biochemist by training, he came to the NLM from the National Cancer Institute, where he was chief of NCI’s Cancer Chemotherapy Service Center, investigated environmental carcinogens and developed drug therapies for cancer.

Automation, the promise of information systems, and the chance to expand private-public partnerships lured Joe to the NLM under Director Marty Cummings.  Joe was credited with developing MEDLINE (teaming up with the late Davis McCarn) and DOCLINE, expanding the Regional Medical Libraries, rejuvenating the NLM Associate Program, introducing contracts to boost library services, and increasing the efficiency and effectiveness of the training offered on NLM’s specialized databases. Through it all Joe never lost sight of the library’s end users, appraising every investment, every new initiative, and every advance in terms of how it would meet the needs of health science librarians and the people they served.

A man of amazing energies and intellectual generosity, Joe single-handedly inspired, cajoled, and in some cases badgered NLM staff to operate at the top of their game. Ever the passionate advocate, he also worked to advance women and minorities in the profession. As former Associate Director for Library Operations Sheldon Kotzin noted, Joe “never wavered in his commitment to the principles of equal opportunity.”

As Joe approached retirement he endowed a lectureship to be given annually: every odd year at the MLA meeting; on the even years, at or near NLM.

Many notable people have delivered the Leiter Lecture, among them Nobel Prize winner Joshua Lederberg; renowned heart surgeon Michael DeBakey; Tony Fauci, director of the National Institute of Allergy and Infectious Diseases; and Francis Collins, NIH Director and a pioneering geneticist who led the effort to map the human genome.

I had big shoes to fill.

I listened to some of the earlier lectures and thought of the innovations portended by those visions. The future—or futures—my predecessors envisioned is the present we are living now. Their stories became our stories, and I hope the story I contributed will blossom into a shared vision of how the National Library of Medicine can and will serve society—as the NIH hub for data science, and as a platform for discovery and a pathway to engagement in the development and expansion of data-powered health.

It’s a vision that ultimately holds the individual at the center and imagines a future I like to think Joe Leiter would support.

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