Health, Culture, and Community

Personal history impacts how we understand health information.

While in New Mexico last month, I came upon something profound at the Albuquerque Museum.

While I enjoyed the exhibitions and sculptures very much, it was a sign that really got me thinking:

Art in New Mexico is characterized by celebration of tradition, innovation within heritage, and groundbreaking developments of new forms and ideas. Many museums make sense of this diversity by dividing cultures into more clearly identified groups. However, humans do not always live in easily explained communities.

“Humans do not always live in easily explained communities.”

Wow.

This sentence hit me hard.

It also got me thinking about NLM. We’re an institution with a great heritage. We’re on the verge of even more groundbreaking developments and new ideas. And we’re exploring how to better reach out to a more diverse audience.

We try our best to reach every possible individual and audience and yet, when faced with the challenges of making information available and accessible to all, we sometimes fall back on convenient nationalistic or linguistic characterizations.

For example, people appreciate and use the resources we’ve translated into Spanish, from MedlinePlus en español to infoSIDA and MeSH, but is it enough?

We partner with the Pan American Health Organization to strengthen local and national infrastructures regarding disaster health information, we fund research into health disparities, and we reach out to Hispanic Americans and other minority groups, but can we do more?

How might the quote above, from the Albuquerque Museum, inspire us to think differently about what we do and how we do it?

I don’t have all the answers, but let me tell you what I’m thinking.

First, we must bring our materials into the lives of people we serve in a way that includes both hope and authority. Too often those involved in health care emphasize factual accuracy and professional expertise—to the exclusion of anything else—when they impart health information. Obviously, accuracy and authority matter tremendously, but hope has its place. By providing information in a more helpful and hopeful way, we may even accelerate the compliance with, insights into, or adoption of healthful living that the information is intended to produce.

Next, we must respect the fact that knowledge is shaped by culture and customs. As we share the biomedical knowledge of the world with the world, we should convey the perspective and culture embedded in the work. Knowledge without context, or without cultural competence, is often neither heard nor believed.

And finally, we must remember that, like art in a museum, how people view what they’re seeing matters.

Our ability to understand and act (or fail to act) upon health information is ultimately impacted by our personal history—from experiences to feelings to underlying and often unspoken assumptions and ideas. Rather than blank slates, passively receiving new content, people are active participants in discovering the usefulness of and meaning in the health information they’re given.

Accommodating complexity is not easy, so I’ll continue to mull over how NLM can help, but I invite your ideas, too.

How does your community or your experience shape how you receive health information? How can we deliver health information in a way that takes into account the complexity of our country’s communities?

 

Addressing Health Disparities to the Benefit of All

Guest post by Lisa Lang, head of NLM’s National Information Center on Health Services Research and Health Care Technology

Singer-actress Selena Gomez shocked her fans this past September with the announcement that she had received a kidney transplant to combat organ damage caused by lupus.

Lupus, an autoimmune condition, strikes women much more than men, with minority women especially vulnerable. Not only is lupus two to three times more common in African American women than in Caucasian women, but recent studies funded by the CDC suggest that, like Ms. Gomez, Hispanic and non-Hispanic Asian women are more likely to have lupus-related kidney disease (lupus nephritis)—a potentially fatal complication.

Documenting such health disparities is crucial to understanding and addressing them. Significantly, the studies mentioned above are the first registries in the United States with sufficient Asians and Hispanics involved to measure the number of people diagnosed with lupus within these populations.

Investment in research examining potential solutions for health care disparities is essential.

In 2014, The Lancet featured a study that examined patterns, gaps, and directions of health disparity and equity research. Jointly conducted by the American Academy of Medical Colleges and AcademyHealth, a non-profit dedicated to enhancing and promoting health services research and a long-time NLM partner, the study examined changes in US investments in health equities and disparities research over time. Using abstracts in the NLM database HSRProj (Health Services Research Projects in Progress), the researchers found an overall shift in disparities-focused projects. From 2007 to 2011, health services research studies seeking to document specific disparities gave way to studies examining how best to alleviate such disparities. In fact, over half of the disparities-focused health services research funded in 2011 “aimed to reduce or eliminate a documented inequity.” The researchers also found significant differences in the attention given to particular conditions, groups, and outcomes. An update by AcademyHealth (publication forthcoming) found these differences continue in more recently funded HSR projects.

A more nuanced appreciation of affected groups is also critical to addressing health disparities. For example, the designation “Hispanic” is an over-simplification, an umbrella construct that obscures potentially important cultural, environmental, and even genetic differences we must acknowledge and appreciate if we are to maximize the benefits promised by personalized medicine. Reviews such as “Hispanic health in the USA: a scoping review of the literature” and “Controversies and evidence for cardiovascular disease in the diverse Hispanic population” highlight questions and conditions that would be informed by richer, more granular, data.

Lupus is one such condition. Research into this disease’s prevalence and impact among Hispanics is underway, but more attention may be warranted. There are almost 100 active clinical studies in the US targeting lupus currently listed in ClinicalTrials.gov and, of these, 15 address lupus nephritis. And while about 5% of ongoing or recently completed projects in the HSRProj database explicitly focus on Hispanic populations, only one, funded by the Patient-Centered Outcomes Research Institute, specifically addresses lupus. (You can see this study’s baseline measures and results on ClinicalTrials.gov.)

Perhaps a celebrity like Ms. Gomez publicly discussing her experience with lupus will spark more attention from both researchers and the public seeking to contribute to knowledge and cures.

After all, we are all both fundamentally unique and alike. Reducing—or better yet, eliminating—health disparities benefits us all.

Guest blogger Lisa Lang is Assistant Director for Health Services Research Information and also Head of NLM’s National Information Center on Health Services Research and Health Care Technology (NICHSR).

Photo credit (The Scales of Justice, top): Darius Norvilas [Flickr (CC BY-NC 2.0)] | altered background

The Hōkūleʽa Worldwide Voyage Comes Full Circle: The NLM Connection

Guest post by Dr. Fred Wood, Outreach and Evaluation Scientist in the Office of Health Information Programs Development.

On June 17, the ocean-going, double-hulled canoe Hōkūleʽa (named for Arcturus, the Star of Gladness) successfully completed its historic Worldwide Voyage.  The Hōkūleʽa departed Honolulu, Hawaiʽi, on May 18, 2014 and over the last three years traveled more than 60,000 nautical miles, stopping at 150 ports in 27 nations, while completing its circumnavigation of the globe.

Launched in 1975, the Hōkūleʽa recreates the type of ocean-going canoes used by Polynesians for thousands of years to traverse the Pacific Ocean and to discover other Pacific islands, including Hawaiʽi.  Hōkūleʽa’s original mission was to prove that traditional double-hulled canoes “powered” only by native knowledge of the wind and swells, as well as the sun, moon, stars, and ocean wildlife, could voyage across the 2,500 miles each way between Hawaiʽi and Tahiti. Once accomplished, this initial mission expanded to include voyages to other islands throughout the Pacific, west to Asia, and east to the US mainland.

Building on this voyaging success, the Hōkūleʽa transformed into a symbol for a broader revitalization of Native Hawaiian culture, pride, ecological sustainability, and health, messages that remain at the heart of its global voyage.

When that voyage reached Washington, DC in May 2016, NLM hosted Nainoa Thompson, one of only a handful of Native Hawaiians trained in the traditional navigation methods referred to as wayfinding. Thompson spoke passionately about the history and role of the Hōkūleʽa in promoting Hawaiian culture and health, and in advocating for environmental protection, sustainability of the oceans, and world peace.

Even before the Worldwide Voyage and Thompson’s lecture, NLM had closely followed the Hōkūleʽa and honored its importance in NLM exhibitions and associated websites and apps.

model of a double-hulled sailing canoe
A scale model of the Hōkūleʻa graced the entrance to the Library from 2011-2015.

For the NLM exhibition Native Voices: Native Peoples Concepts of Health and Illness, the Library commissioned a one-sixth scale model of the Hōkūleʽa built by Hawaiian artisans to the exact specifications of the full-sized canoe. The model was on display for several years in the NLM rotunda. In addition, Native Voices included interviews with Thompson, and with several of Hōkūleʽa medical officers, including Drs. Ben Young, Ben Tamura, and Marjorie Mau, who served on various legs of the Hōkūleʽa’s 40+ years of ocean voyaging.

The Hōkūleʽa and the ancient arts of navigation and voyaging were also at the center of the NLM exhibition A Voyage to Health, which looked at how the resurgence of Native Hawaiian culture helped heal the soul of the community. When the canoe and her crew returned to Honolulu last week, A Voyage to Health was there as part of the welcoming celebration.

Both traveling exhibitions have visited dozens of venues across Hawaiʽi and the rest of the US. And NLM’s scale-model Hōkūleʽa is now on display at the Disney Aulani Resort, in West Oahu, under auspices of the Friends of the Hōkūleʽa and Hawaiʽiloa.

NLM celebrates the accomplishments of the Hōkūleʻa and the entire Hawaiian voyaging community that participated in the Mālama Honua (“Care for the Earth”) Worldwide Voyage.  As that voyage comes to a close, NLM acknowledges once again its significance as an icon of Hawaiian culture, values, and health.

More Information
Native Voices Exhibition: NLM Hōkūleʽa microsite
Video: Nainoa Thompson’s Special Lecture on the Hōkūle’a and Native Hawaiian Health (May 23, 2016)
NIH Record: “For Native Hawaiians, Canoe Instills Pride, Healing”

Head Nurse of the Library?

How a nurse’s way of knowing helps me do my job.

Many of you know I am a nurse. I began my career with a BSN from the University of Delaware (1975) and then completed an MSN at the University of Pennsylvania (1979). I also hold a license as a registered nurse.

I think of myself as a psychiatric nurse, although I spent a few years in the mid-1970s on the 3-to-11 shift in a busy surgical shock-trauma ICU. I have also served on the faculty of nursing at Case Western Reserve and at the University of Wisconsin-Madison.

It helps to understand nursing to see why being a nurse is such a great asset in my role as director of the National Library of Medicine.

To me nursing is fundamentally the diagnosis and treatment of the human response to disease, disability, and developmental challenges.

Note that phrase “human response,” i.e., how people react to the challenges in their lives.

Nurses focus on the human response, while the biomedical knowledge we have, like pathology or anatomy, helps us understand what a person is coping with and what kinds of complementary or supplementary supports are needed.

As noted nurse and author Virginia Henderson observed, nurses must actively engage with the patient to help him or her perform “those activities contributing to health or its recovery (or to a peaceful death) as he [or she] would do unaided had he [or she] the necessary strength, will or knowledge,” with independence from the nurse the common goal.

Nursing addresses the whole person and helps that person live to the fullest extent.

Along the way, nurses come to know people differently than the other clinical disciplines. And that knowledge, I’ve discovered, helps me as Library Director.

It affords me special insight into the public patrons who use our services. I can imagine a young mother using MedlinePlus in the middle of the night to figure out how to comfort a feverish child. I can anticipate the information needed by someone with a late-stage cancer diagnosis and recognize the need to complement journal articles on treatment options with literature on comfort measures and death with dignity. And I can appreciate the challenges of navigating the health care environment, from its specialized vocabulary to its unique culture.

A nurse’s way of knowing helps me set policies for integrating into the Library’s formal standards and language systems the terminologies that address the social and behavioral domains of health. Nurses live in those domains, as much if not more than the technical or scientific.

Perhaps most importantly, my experience as a nurse has taught me that each person has his or her own strengths, and that the Library’s resources should build upon those strengths to help the person make healthful choices, not just explain deficits.

But the benefits of being a nurse and a library director do not run only one way. Directing a library also lets me fulfill my nursing role, as I help others achieve the highest level of wellness possible.

As NLM director, I advocate for those in need, ensuring the literature is sufficiently inclusive. I improve patient care by guiding the fields of data science and biomedical informatics toward a future where professionals and patients interact to achieve care goals. And I model for younger nurses a career path that engages all that I am as a nurse while collaborating meaningfully across disciplines.

Being a nurse is not a job requirement for directing the National Library of Medicine, but it certainly is an asset. Advanced education as a health professional gives me an appreciation for how complex health care is and how important it is to engage all disciplines toward addressing that complexity. Engaging patients as partners in care motivates me to build resources that foster full participation of people in health. And experience as a team player in psychiatric services enables me to join with my colleagues from library science, information and computer science, linguistics, medicine,  and other disciplines to make the NLM the foundation of the future of health and discovery.

Walk with Me While I Walk with Those Who Walked for Freedom

Those bold enough to confront challenges bring change.

Throughout February, in commemoration of Black History Month, the National Library of Medicine and the NIH Office of Equity, Diversity, and Inclusion (EDI) join together to celebrate and honor the legacy of Dr. Martin Luther King, Jr. and the civil rights movement with a poster exhibition in the lobby of the Lister Hill Center.

A few weeks ago, I had the privilege of touring this exhibition with Ms. Debra Chew, Director of NIH EDI, and Mr. Danny Dickerson, Director of EDI’s Diversity and Inclusion Division. We talked about the power of citizens to affect change and observed how far we have come—and how far we have yet to go—toward true equality. But we also took time to quietly take in the exhibit.

I was struck immediately by how young everyone looked in the photos—and in fact, they were. Julian Bond was only in his mid-20s but already a skilled activist, and Shirley Chisholm was not quite 40, still a few years shy of being the first African-American woman elected to Congress. The images of the Reverend Martin Luther King, Jr. were the most striking to me—odd because his face is so familiar. But in these images I particularly noticed his eyes. At one and the same time they were lighthearted and welcoming, fierce and wise.

As a teenager in the 1960s and as the NLM Director today, I felt Dr. King’s call to act and to serve, with the slight warning that, while both could be fulfilling, both would be fraught with challenge.

But history has shown that those bold enough to confront challenges bring change.

Image collage
Photo collage of civil rights icons Rosa Parks, Thurgood Marshall, Dr. Martin Luther King, Jr., Jackie Robinson, Shirley Chisholm, and Julian Bond.

The inspiration and hard work of the civil rights movement shaped health care in so many ways. We recognized that separate care is not equal care, and that those who experience the chronic stress of poor housing, limited schooling, and societal bias (increasingly subtle but sadly still present) have special needs. The medical literature is more complete now than it was 50 years ago, with greater attention to the experience of health by those whose race and ethnicity differ from what we once called “the majority.” NLM’s Specialized Information Services Division uses in-person and web-based strategies to make health information not simply available, but also accessible to those who hold different cultural values and have different life experiences. And our History of Medicine Division guides us to preserve not only typical images of health, such as anatomy drawings, but also the unexpected—images like the one above showing members of the Medical Committee for Civil Rights as they participate in the 1963 March on Washington for Jobs and Freedom.

Do images inspire you to think about health?

Then take a look at some of the over 70,000 images available through our History of Medicine collection and see what awaits.

And if you’re nearby, I encourage you to come to the National Library of Medicine, NIH Building 38a (Lister Hill Center), to walk through our brief history of the civil rights movement and to consider the brave men and women who stepped forward to ensure that all people share equal rights.

The exhibition is open through February 28 from 8:30 am to 4:00 pm weekdays, except federal holidays.

For more information about the exhibition, please contact Melanie Modlin, Deputy Director, Office of Communications and Public Liaison, National Library of Medicine at 301.496.7771.