Information Along the Underground Railroad

A couple years ago, I wrote about how the paintings in Jacob Lawrence’s Migration Series inspired me to think about how the National Library of Medicine gets information to people on the move—people displaced by violence, natural disasters, or economic crises. I felt a similar stirring after viewing the Jeanine Michna-Bales exhibition Photographs of the Underground Railroad at the Phillips Collection last month.

The deep indigo and shadowy black of Michna-Bales’ photographs stand in stark contrast to the oranges, greens, and yellows of Lawrence’s paintings, which occupy a room across the hall at the Phillips, but both have things to tell me.

Michna-Bales’ collection of nighttime photographs immediately pulled me in, helping me sense a whisper of the fear and anxiety escaping slaves might have felt as they slogged their way north toward freedom. The dark, shadowed images required me to peer in closely to detect a house or barn that might have provided a safe place to hide—or concealed danger. The Drinking Gourd constellation, isolated in the night sky, guided the travelers north along dirt roads and winding rivers, while cypress swamps, mangroves, and thick vegetation, barely perceptible in the moonlight, slowed passage.

It’s a chilling piece of history brought to life through the photographer’s lens, but as the exhibition curator underscored, slavery still exists today. More than 20 million people are enslaved around the world.  More than 50% are women; 25% are children under the age of 18. These staggering figures cry out for redress.

What can NLM do to help those working to combat this crisis or treat its victims?

We provide information to those on the front lines.

The Library’s literature can help primary care physicians and emergency room staff identify patients at risk and potentially rescue victims of human trafficking. It can help clinicians deliver health care that is both trauma-informed and culturally sensitive, attuned to victims’ needs and backgrounds. It can give educators ways to train health professionals to recognize and help victims, offer policy makers strategies to reduce human trafficking, and encourage the global health community to investigate the social and economic elements that drive such exploitation. The Library also has articles on human trafficking for the horrific purpose of organ removal and others on the relationship between human trafficking and stress-related illnesses and drug use among survivors.

It’s a harrowing collection but a necessary one, if we are to combat this crisis.

To further help those who are fighting this fight, PubMed lists articles similar to the ones initially found, helping to shape a coherent picture of the clinical challenges, health services, and public policies that can counteract this crime or mitigate its effects. We also provide the free full text of publicly funded research on this topic.

We may be able to do even more in the future. I see opportunities to tailor the health information we provide to the personal culture, worries, and recent experiences of the person searching. It’s a bold vision, but reaching the most vulnerable makes it worth the effort.

If you think someone may be a victim of human trafficking, call or encourage them to call the National Human Trafficking Hotline at (888) 373-7888 for help, resources, and information. You may also text 233733.

The Wisdom in Asking Questions

The following has been adapted from a commencement address I gave last month.

Congratulations, graduates! You’ve spent years preparing for this day, years of answering questions—on exams, in clinical debriefings, and in response to your patients’ inquiries. Knowing those answers has been essential to getting you to where you are today.

But now, as you launch a career of service to patients and society, you must become as adept at asking questions as you are at answering them. To be successful, you will need to embrace intentional questioning.

Intentional questioning:

  • Is asking purposeful, well thought-out, understandable, and well-timed inquiries
  • Inspires the responder to take the next step into awareness, action, and insight
  • Is not intended to stimulate recall or appraise comprehension, but to engage with another to engender wonder, reasoning, and action

Think back to the first questions you asked: Why is the sky blue? When is dinner? Where is Mom? These questions were motivated by a curiosity about the world, coupled with a need to feel tethered or secure. I want you to return to that childhood questioning—be curious, know your tethers.

Questions convey wonder about the world and about the “other.” Asking questions of our patients helps them reveal themselves and their concerns. Asking questions of science advances the knowledge needed to diagnose and treat the human response to disease, disability, and developmental challenges. Asking questions reveals where new technologies might help resolve complex health problems, and where innovative technologies may have inadvertently disenfranchised some of our sisters and brothers.

So, embrace asking questions, but ask your questions judiciously. Make sure the questions are worthy.

What does it take to ask good questions?

  • Curiosity
  • Interest
  • A compelling need to know
  • Humility
  • An understanding of the knowledge, skills, motivation, and cultural characteristics of the other

Forty years ago, when I attended my own MSN graduation at Penn, there was no iPhone, no internet, and no PubMed. Now I direct the largest biomedical library in the world, and every day five million people use our resources to answer questions. So, right now you could say I’m in the question-answering business.

But I got here by asking questions: How can computers help nursing? In what ways can we help people better take care of themselves? If we broadened the definition of health to encompass the social and behavioral domains, could we improve health overall?

These questions propelled my research forward and shaped my career. But I didn’t even know enough to ask them early on. No one did. No matter how skilled they were, my faculty—like your faculty—could not have anticipated the knowledge nurses would need in ten years, twenty years, fifty years. You must discover that knowledge, often on your own. That is exactly why you must become adept at intentional questioning.

Intentional questioning addresses three realms.

  1. Knowing self
    • Am I ready?
    • What more do I need to know?
    • Who else should be with me?
    • What would my future self wish I had asked of me now?
  2. Knowing the world (which can guide our research)
    • Why?
    • What if … ?
    • Who can help me know this better?
    • What might be, or has been, the impact of innovation?
  3. Knowing others (such as patients)
    • What brings you here?
    • What can I do for you?
    • What questions do you have? Because listening to the types of questions people ask and the way they ask them can teach us a lot about how they frame the world and add meaning to the important issues in their lives.

Questions are the starting point of dialogue and the starting point of engagement.

And once you ask a question, you must be ready to accept the answer. You don’t always have to like it—the answer to the first research question I posed turned out to be the exact opposite of what I wanted it to be, and then I had to do some fast thinking—but you must always deal with the answer.

Not asking questions

Finally, I must point out that sometimes not asking a question is more powerful than asking it.

Let me tell you a story about one of the most important questions never asked.

In Michael Frayn’s Tony Award-winning play “Copenhagen,” Niels Bohr, his wife Margrethe, and Werner Heisenberg reflect on a long-ago evening when Heisenberg visited Bohr to learn the secret of creating heavy water, which would have accelerated Germany’s development of the atomic bomb. Bohr, in a later conversation with his wife, confessed that he deliberately did not ask Heisenberg the one question that would have led Heisenberg along the line of reasoning that could have resulted in Germany successfully creating an atomic bomb.

Why am I telling you this story? To bring home the idea that sometimes the most important aspect of intentional questioning lies in not asking a question.

When during our practices do we intentionally not pose a question?

As nurses, we might hold off because the person is not ready to hear the answer. Questions confront people with uncertainties and consequences, possibly long before a person is ready to face them.

Cultural factors can also influence our decision. Is this a culture in which an individual has the self-efficacy to answer? Or is this a culture in which complex questions are answered by elders, a family network, or friends?

Sometimes we hold questions because the moment demands our attention and we cannot be distracted from the focus and energy needed to resolve the crisis. And sometimes we don’t ask because we recognize that current circumstances—the state of knowledge or measurement or analytics—aren’t at a place to deliver a proper answer.

My wisdom for you

Graduation speakers are supposed to impart wisdom. In my life the deepest wisdom has arisen from conversations that began with questions. So my wisdom for you: Ask questions early and often.

Questions are part of your future—whether judiciously asking a question or intentionally withholding one. Your education will provide a solid foundation on which to formulate those questions and the base of a scaffolding on which to hang your new understanding.

So I leave you with a bold direction: Stop knowing so much—and be ready to ask more questions! You are ready to be intentional questioners. Please embrace the role because someday, I may be your patient.

Photo credit (commencement, top): Angela Radulescu [Flickr (CC BY-NC-SA 2.0)] | cropped

Paying It Forward

On the importance of honors and awards

We’re approaching conference season and with it, the awards that honor the best in our professions. It’s thrilling to be recognized by one’s peers for notable accomplishments or a stellar career. But I’ve found it can be just as rewarding to nominate someone for such an honor.

It’s both personally and professionally gratifying to me to identify people whose high-caliber work is worthy of public recognition. I enjoy helping colleagues or peers experience the glow that comes with knowing that others value and appreciate their efforts. I take pride in nominating those who give so much to their work, toiling, at times, in relative obscurity. I like to shine a light on their accomplishments and contributions, recognizing their efforts and even more so their impact. Finally, by nominating others, I am paying it forward, acknowledging the debt I owe to those who’ve watched over my career (thank you, Margaret Grier!) and perhaps inspiring those I nominate to nominate others.

Sometimes, those being nominated see it as an expression of gratitude for their professional contributions. And certainly, nominations can be that. But just as often, I nominate others out of a deep sense of awe at what they’ve accomplished in the face of challenges and setbacks. I respect their commitment and their resilience, and I marvel at their tenacity, and yes, even their genius. In nominating them, I not only get to dive deeply into their work—deepening my appreciation for it along the way—but I also learn about its origins and its significance, the service it provides or the problem it solves.

Service also underpins another side effect of awards, particularly those that convey membership in an honorary society. Such honors can be invitations to serve at a higher level—to join fellow members in working together to benefit society.

I’ve often thought of my own memberships in the American Academy of Nursing, the American College of Medical Informatics, and the National Academy of Medicine as both acknowledgements of my work and opportunities to give that work broader impact. It’s like getting a new Rolodex—or for the younger folks, an expanded contacts list—of colleagues with whom I can partner to advance key issues in support of health and health care. And for someone committed to service, I can think of no better gift than to have access to such a Dream Team.

Aside from these individual perks, being nominated or winning an award brings collateral benefits to the awardee’s home institution, to the organization making the award, and to society as a whole.

The home institution gets a boost because an award to one of its staff inevitably highlights the work of the group. Each time I nominate an NLM staffer for an award or fellowship, I get another chance to tell the Library’s story, a fresh opportunity to communicate what we do, how important it is, and how well we do it. And should a staff member win an award? Then the spotlight gets even bigger, shining brightly on what she or he has done as part of the NLM mission.

Professional societies and other organizations also benefit from the awards process. The adage “being known by the company you keep” applies here, as the reputations and contributions of those honored burnishes the public’s perception of the awarding institutions.

And though they might seem removed from the process, the public benefits from professional awards as well. The recognition an award brings can deepen the reach of the work behind it, and that extended reach can, in turn, translate to real lives impacted. The attention an award attracts can also inspire young professionals, pushing them to do more, to develop new skills or take on grander challenges. Their subsequent accomplishments have the potential to profit us all.

It might be too late to nominate a colleague for this year’s round of awards but give some thought to those in your sphere who are deserving and consider nominating them next time. I bet you’ll feel uplifted and encouraged by the process and amazed, as I so often am, by the innovation, brilliance, and grit we are privileged to witness every day. Isn’t it time it got recognized?

Didn’t you used to be a nurse?

Didn’t you used to be a nurse?

I get this question more often than you might expect—and frankly, a little more often than I would expect.

I am a nurse who presently serves as the director of the National Library of Medicine. I’m the first nurse to direct the Library but not the first licensed health professional to do so. In fact, all of my predecessors have been licensed health professionals—specifically, physicians. I wonder how many of them were asked, “Didn’t you used to be a physician?”

The answer to the nurse question, by the way, is, “No.”

I am a nurse. I didn’t used to be a nurse.

I have an active license as a registered nurse. I am a member of the American Nurses Association. And though I might wait a beat to raise my hand when that call comes over the airline public address system—“Is there a health professional on board? We have an emergency.”—I sometimes do, doing what I can to help but always deferring to someone with more current clinical knowledge.

I don’t even think it’s possible to leave nursing behind. Nursing is as much a calling as a profession. The calling fuels the desire to be a professional with specialized knowledge, operating under a contract with society (Nursing’s Social Policy Statement: The Essence of the Profession, 2010).  One does not forget the knowledge, nor does one abandon the calling.

A commercial years ago used the slogan, “If caring was enough, anyone could be a nurse.” I care, but that does not make me a nurse. I’m a nurse because I possess specific, advanced knowledge about the diagnosis and treatment of the human response to disease, disability, and developmental challenges, and I apply that knowledge to caring for others.  Today, I demonstrate that caring and fulfill my contract with society as the director of the largest biomedical library in the world.

It takes 1,700 women and men to bring to society all the products and services NLM offers. But being a nurse gives me insights into and an understanding of health that help me channel their efforts in different ways. Being a nurse broadens my perspective on what constitutes relevant health information. Being a nurse drives me to connect the knowledge of how to manage a health problem with the skills needed to do it. It highlights that health is a team sport, not a solo pursuit, and that I must create the environment that lets all team members, including patients, their family, and friends, operate at the top of their skills. And as essential as trusted, quality health information is, being a nurse reminds me that information is only part of the equation. Personal motivation, a sense of self-efficacy, and the ability to act in accord with one’s values and outlook on life contribute mightily to someone’s willingness and ability to move toward health—and even how they define health.

Of course, I’m not the only nurse working outside a traditional clinical setting. Nurses do many things, but all fall under nursing’s contract with society: helping people, sick or well, by understanding their human responses to disease, disability, and development and partnering with them to move toward health informed by mutual respect and shaped by our combined talents and skills.

So, no, I didn’t used to be a nurse. I am a nurse. And my job as a nurse is to lead a library.

Come join me in my practice, add your skills and knowledge to the mix, and work with me toward the future of data-powered health.

Code-Breaking Librarians

Did you know that librarians helped crack enemy codes in support of the US war effort during World War II?

Until I read Liza Mundy’s book Code Girls: The Untold Story of the American Women Code Breakers of World War II, I was unaware, but when I found out, I was certainly not surprised.

Codes and ciphers are the tools of spies and subterfuge. Coded messages systematically replace a word, phrase, or sentence with specific alternates. In ciphers, each letter is replaced according to some formula or algorithm, making ciphers much harder to break.

The US military, caught by surprise at Pearl Harbor, realized they needed to quickly ramp up a code-breaking unit. They turned to thousands of women with classical liberal arts educations and built on those skills to assemble teams of expert code breakers. Like their counterparts working at England’s Bletchley Park, the American women’s collegiate experience reading and interpreting complex texts or wrestling with advanced mathematics prepared them well for untangling the shifting, arcane world of crypotanalysis.

Librarians brought their own skills to the teams. In addition to breaking codes, these professionals, mostly women, set the stage for their teams’ successes. They kept records. They organized vast amounts of disordered and unrelated information into logical categories. And by applying the principles of indexing and cataloging, they connected previously disjointed information and made it discoverable.

Librarians played important wartime roles outside the US as well.

Early in the war, Richard Hayes, director of the National Library of Ireland, was tapped by Irish army intelligence to help decode a cipher found on a German agent captured in Ireland. His success prompted Irish prime minister Éamon de Valera to set up a small office in Dublin for Hayes where Hayes and a small team could decode Axis messages being transmitted out of Ireland—all while Hayes continued to serve as library director. Hayes’ involvement had a significant impact on the war. His ingenuity and tenacity enabled him to unlock a notoriously difficult Nazi code, one that stumped Britain’s MI5 and the intelligence experts at Bletchley Park.

Most librarians today aren’t deciphering secret codes, but the skills behind that work—order, reason, connection, and interpretation—remain essential. We still need skilled professionals to create and maintain enduring systems to organize data, information, and knowledge and make them accessible. Unlocking the secrets of medicine and science depend upon it.

And yet, like the code-breaking librarians of World War II, today’s librarians often go unrecognized and their contributions unacknowledged. What can we do to change that?

Science and Medicine Need Women

The first woman ever to be an institute director at NIH, Dr. Ruth Kirschstein, took the helm at the National Institute of General Medical Sciences in 1974. It took 17 more years for Dr. Bernadine Healy to become the first—and so far only—female director of NIH.

Today, I am one of 10 women serving as directors across the 27 institutes and centers at NIH—the most female directors NIH has ever seen at one time. Clearly, we’ve made some important gains, but as NIH Director Dr. Francis Collins has recently said, “We have not achieved the point where women have their rightful place in leadership.”

It’s not that women aren’t interested in science or in leadership. Instead, studies are finding that far too many women who enter the field abandon their careers, whether due to hiring bias, the wage gap, or sexual or gender harassment. We’re all losing due to that loss of talent and intelligence.

Science needs women, not just as laborers, but as thinkers, innovators, and leaders. It needs our different perspectives and our thoughts on what issues are worthy of research. It needs our different ways of attacking problems, interpreting results, and considering solutions. It needs our diversity to help reduce bias and to yield findings that are more generalizable. The problems science addresses are too large, too multifaceted, and too important to tackle using the talents of only 50% of the population.

It’s a fertile and shifting time. We are becoming increasingly aware of the systemic barriers that keep society and science from benefiting from women’s full contributions, but awareness isn’t enough. We must act. We must change.

NIH is working to do that. New policies and practices are in place to address sexual harassment at NIH, at the institutions we support, and anywhere NIH research activities take place. And NIH has just completed a survey of all staff and contractors to help assess NIH workplace climate and harassment.

It’s a start.

I’m proud to be a part of a group tasked with recommending what comes next. As part of the NIH Director’s Advisory Committee Working Group on Changing the Culture to End Sexual Harassment, I have the opportunity to help redress wrongs and improve engagement. Together my colleagues and I will be looking for ways the institution can promote a safe and inclusive environment.

On a personal level, I work to effect that change by nudging my colleagues gently or, if needed, bluntly, when implicit bias, traditional thinking, or even malignant motives stand in the way of fair judgment or women’s rightful progression in science. And I try to engage all my colleagues, regardless of gender, in working toward ways to dismantle the barriers that hold women back.

Just as with scientific research itself, we need everyone’s full participation in the solution.

What guidance do you have for me about how to take up this important mantle?

Learn More
Women scientists at NLM and throughout history.

AI is coming. Are the data ready?

The artificial intelligence (AI) revolution is upon us. You can barely read the paper, watch TV, or see a movie without encountering AI and how it promises to change society. In fact, last month, the President signed an executive order directing the US government to prioritize artificial intelligence in its research and development spending to help drive economic growth and benefit the American people.

Artificial intelligence refers to a suite of computer analysis methods—including machine learning, neural networks, deep learning models, and natural language processing—that can enable machines to function as if possessing human reasoning. With AI, computer systems ingest and analyze vast amounts of data and then “learn” through high-volume repetition how to do the task better and better, “reasoning” or “self-modifying” to improve the analytics that shape the outcome.

That learning process results in some pretty amazing stuff. In the health care field alone, AI can determine the presence or absence of abnormalities in clinical images, predict which patients are at risk for rare disorders, and detect irregular heartbeats.

To make all that happen requires data, massive amounts of data.

But like the computer-era quip, “garbage in, garbage out,” the data need to be good to yield valid analyses. What does “good” mean? Two things:

  • The data are accurate, truly representing the underlying phenomena.
  • The data are unbiased, i.e., the observations reflect the complete experience and no inherent errors were introduced anywhere along the chain from data capture to coding to processing.

As much as we’d like to think otherwise, we already know data are biased. Human genetic sequences drawn from studies of white males of Northern European descent do not adequately represent the genetic diversity within women or people from other parts of the globe. Image data generated by different X-ray machines might show slight variations depending upon how the machines were calibrated. Electrical pathways collected from neurological studies conducted as recently as a decade ago do not reflect the level of resolution possible today.

So, what can we do?

It doesn’t make sense to throw out existing data and start anew, but it can be misleading to apply AI to data known to be biased. And it can be risky. Bias in underlying data can result in algorithms that propagate the same bias, leading to inaccurate findings.

That’s why NLM is working to develop computational approaches to account for bias in existing data sets and why we’re investing in this line of research. In fact, we’re actively encouraging grant applications focused on reducing or mitigating gaps and errors in health data research sets.

I have confidence that researchers will crack the puzzle, but until then, let’s look at how the business intelligence community is approaching the issue.

Concerned with reducing the effect of biases in management decision-making, business intelligence specialists have identified strategies to help uncover patterns and probabilities in data sets. They pair these patterns with AI algorithms to create calibration tools informed by human judgment while taking advantage of the algorithms’ power. That same approach might work with biomedical data.

In addition, our colleagues in business now approach data analysis in ways that help detect bias and limit its impact. They:

  • invest more human resources in interpreting the results of AI analytics, not relying exclusively on the algorithms;
  • challenge decision makers to consider plausible alternative explanations for the generated results; and
  • train decision makers to be skeptical and to anticipate aberrant findings.

There’s no reason we can’t adopt that approach in biomedical research.

So, as you read and think more about the potential of artificial intelligence, remember that AI applications are only as good as the data upon which they are trained and built. Remember, too, that the results of an AI-powered analysis should only factor in to the final decision; they should not be the final arbiter of that decision. After all, the findings may sound good, but they may not be real, just an artifact of biased, imperfect data.