Are We Making a Difference? Outreach Evaluation in Practice.

Donald A.B. Lindberg, M.D., brought with him when he joined NLM an inquisitive mind, tech savvy, and new ideas. He was an early advocate of both outreach and evaluation innovation at NLM. Dr. Lindberg initiated and supported multiple pilot test and implementation projects to strengthen NLM's health information outreach to healthcare providers, research scientists, health science and hospital librarians, and the general public, including minority and underserved populations. He helped steer NLM's transition to the Internet, and NLM's development of a robust framework for evaluating Internet and Web-based health information dissemination and outreach to its many audiences. Dr. Lindberg's leadership led to numerous landmark accomplishments, including the capacity-building "Measuring the Difference" outreach evaluation Guide, and a multidimensional approach to Internet and website evaluation that placed NLM at the forefront of federal agencies using these new and emerging technologies to support their missions.

Native Voices Exhibition: Stories of Health, Wellness, and Illness from American Indians, Alaska Natives, and Native Hawaiians.

The U.S. National Library of Medicine (NLM) exhibition known as Native Voices reflected Donald A.B. Lindberg M.D.'s keen and long-held desire to help improve public understanding of Native American health challenges and honor the culture, tradition, and healing ways of Native Peoples. A centerpiece of the exhibition was a large set of video interviews that Dr. Lindberg conducted with Native health and community leaders. Dr. Lindberg and his team engaged Native advisors in the exhibition development; sought Native input through Listening Circles, Tribal Consultations; and site visits, and made the video interviews accessible via interactive kiosks and iPads. For its time, this was state-of-the-art exhibition technology. The exhibition also included Native artifacts and art works to complement the videos, including a scale model of the iconic Hokule'a Native Hawaiian voyaging canoe, and a full-size Lummi Indian Healing Totem Pole. The totem journeyed across the U.S. prior to its installation next to the NLM herbal garden in Bethesda, MD. A traveling version of the exhibition visited more than 130 venues in 40 States across the U.S. The interview clips and other content are accessible on the exhibition website, and the full-length interviews are retained in the NLM permanent video collection.

Native Voices Exhibition: Stories of health, wellness, and illness from American Indians, Alaska Natives, and Native Hawaiians.

The U.S. National Library of Medicine (NLM) exhibition known as Native Voices reflected Donald A.B. Lindberg M.D.'s keen and long-held desire to help improve public understanding of Native American health challenges and honor the culture, tradition, and healing ways of Native Peoples. A centerpiece of the exhibition was a large set of video interviews that Dr. Lindberg conducted with Native health and community leaders. Dr. Lindberg and his team engaged Native advisors in the exhibition development; sought Native input through Listening Circles, Tribal Consultations; and site visits, and made the video interviews accessible via interactive kiosks and iPads. For its time, this was state-of-the-art exhibition technology. The exhibition also included Native artifacts and art works to complement the videos, including a scale model of the iconic Hokule'a Native Hawaiian voyaging canoe, and a full-size Lummi Indian healing totem pole. The totem journeyed across the U.S. prior to its installation next to the NLM herbal garden in Bethesda, MD. A traveling version of the exhibition visited more than 130 venues in 40 States across the U.S. The interview clips and other content are accessible on the exhibition website, and the full-length interviews are retained in the NLM permanent video collection.

Are we making a difference? Outreach evaluation in practice.

Donald A.B. Lindberg, M.D., brought with him when he joined NLM an inquisitive mind, tech savvy, and new ideas. He was an early advocate of both outreach and evaluation innovation at NLM. Dr. Lindberg initiated and supported multiple pilot test and implementation projects to strengthen NLM's health information outreach to healthcare providers, research scientists, health science and hospital librarians, and the general public, including minority and underserved populations. He helped steer NLM's transition to the Internet, and NLM's development of a robust framework for evaluating Internet and Web-based health information dissemination and outreach to its many audiences. Dr. Lindberg's leadership led to numerous landmark accomplishments, including the capacity-building "Measuring the Difference" outreach evaluation Guide, and a multi-dimensional approach to Internet and website evaluation that placed NLM at the forefront of federal agencies using these new and emerging technologies to support their missions.

Translational Health Disparities Research in a Data-Rich World.

Background: Despite decades of research and interventions, significant health disparities persist. Seventeen years is the estimated time to translate scientific discoveries into public health action. This Narrative Review argues that the translation process could be accelerated if representative data were gathered and used in more innovative and efficient ways. Methods: The National Institute on Minority Health and Health Disparities led a multiyear visioning process to identify research opportunities designed to frame the next decade of research and actions to improve minority health and reduce health disparities. "Big data" was identified as a research opportunity and experts collaborated on a systematic vision of how to use big data both to improve the granularity of information for place-based study and to efficiently translate health disparities research into improved population health. This Narrative Review is the result of that collaboration. Results: Big data could enhance the process of translating scientific findings into reduced health disparities by contributing information at fine spatial and temporal scales suited to interventions. In addition, big data could fill pressing needs for health care system, genomic, and social determinant data to understand mechanisms. Finally, big data could lead to appropriately personalized health care for demographic groups. Rich new resources, including social media, electronic health records, sensor information from digital devices, and crowd-sourced and citizen-collected data, have the potential to complement more traditional data from health surveys, administrative data, and investigator-initiated registries or cohorts. This Narrative Review argues for a renewed focus on translational research cycles to accomplish this continual assessment. Conclusion: The promise of big data extends from etiology research to the evaluation of large-scale interventions and offers the opportunity to accelerate translation of health disparities studies. This data-rich world for health disparities research, however, will require continual assessment for efficacy, ethical rigor, and potential algorithmic or system bias.

Native Voices: Native Peoples' Concepts of Health and Illness in New Mexico: opening a local conversation by hosting a national traveling exhibit.

BACKGROUND: The University of New Mexico Health Sciences Library and Informatics Center hosted the National Library of Medicine's Native Voices: Native Peoples' Concepts of Health and Illness traveling exhibit. The authors' goal was to promote local interest in the Native Voices exhibit, with an emphasis on making the exhibit content and materials available to American Indian communities throughout rural New Mexico. CASE PRESENTATION: We convened a daylong summit to highlight the exhibit and encourage discussion among 30 American Indian community health educators. The summit prompted the compilation and distribution of descriptions of 23 community projects that promote health and wellness. We also took a scaled-down version of the exhibit to 4 rural college campuses around the state that serve significant Native American student populations. Approximately 140 students and faculty interacted with the exhibit materials, and all 4 sites incorporated the exhibit into curriculum activities. CONCLUSIONS: A hosted national exhibit developed into a multifaceted, funded project that engaged with American Indian communities. We demonstrated successful field deployment of a downsized, portable version of the full traveling exhibit to make meaningful connections with members of our outreach population.

Health information Hispanic outreach in the Texas Lower Rio Grande Valley.

PURPOSE: This paper provides an overview of the two-year Texas Lower Rio Grande Valley Health Information Hispanic Outreach (HI HO) project. The project included a needs assessment, four pilot projects, and focus groups on the use of MedlinePlus and MedlinePlus en español. The needs assessment included a survey of physicians' information usage and a review of the circuit librarian program that had been established in 1989. The pilot projects were located at a high school, a rural health clinic, an urban health clinic, and a community center. Diffusion of innovation theory provided a framework for interpreting the results of the pilot projects. METHODS: The survey of physicians' information usage partially replicated a similar 1990 survey. The review of the circuit librarian program included usage statistics, interviews of administrators, and a survey of participants. Pilot project methodology varied by site. At the high school, four students were trained to instruct their peers in the use of MedlinePlus. At the two clinics, a computer workstation was installed for patients to access MedlinePlus. At the community center, staff were trained to use MedlinePlus en español to train community residents. Project evaluation included surveys, focus groups, and interviews. Indicators of success included increased level of consumer use of MedlinePlus, reports by key informants and consumers of how MedlinePlus was used, reports about training, and development of self-sustaining activity. RESULTS: The physician survey documented usage of health information resources in 2002 compared to 1990. The review of the circuit librarian program documented the change in program usage between 1989 and 2003. The pilot project at the high school was the most successful of the four pilot projects in introducing MedlinePlus to a large number of people, followed by the community center project. In the high school and community center projects, the participating institutions had reinforcing educational missions and paid staff who were highly motivated to achieve the project goals. The computer workstations projects at the two clinics were less successful, due in part to limited staff commitment and conflicting priorities. CONCLUSIONS: The HI HO project tested methods of reaching the Hispanic community in the Lower Rio Grande Valley region of Texas. The four HI HO pilot projects varied in achieving their stated objectives. But taken as a whole, the HI HO project significantly contributed to a better understanding of health information outreach to the Hispanic community, knowledge that should be useful to others with similar outreach activities.

The National Library of Medicine's Native American outreach portfolio: a descriptive overview.

OBJECTIVES: This paper provides the most complete accounting of the National Library of Medicine's (NLM's) Native outreach since 1995, when there were only a few scattered projects. METHOD: The descriptive overview is based on a review of project reports, inventories, and databases and input from the NLM Specialized Information Services Division, National Network Office of the Library Operations Division, National Network of Libraries of Medicine, and Office of Health Information Programs Development of the Office of the NLM Director. The overview focuses on NLM-supported or sponsored outreach initiatives involving Native peoples: American Indians, Alaska Natives, and Native Hawaiians. RESULTS: The review of NLM's relevant activities resulted in a portfolio of projects that clustered naturally into the following areas: major multisite projects: Tribal Connections and related, Native American Information Internship Project: Sacred Root, tribal college outreach and tribal librarianship projects, collaboration with inter-tribal and national organizations, participation in Native American Powwows, Native American Listening Circle Project, Native American Health Information, and other Native American outreach projects. IMPLICATIONS: NLM's Native American Outreach reached programmatic status as of late 2004. The companion paper identifies several areas of possible new or enhanced Native outreach activities. Both papers highlight the importance of solid reporting and evaluation to optimize project results and programmatic balance and priorities.

Assessment of the National Library of Medicine's health disparities plan: a focus on Native American outreach.

OBJECTIVES: Overcoming health disparities between majority and minority populations is a significant national challenge. This paper assesses outreach to Native Americans (American Indians, Alaska Natives, and Native Hawaiians) by the National Library of Medicine (NLM). A companion paper details NLM's portfolio of Native American outreach projects. METHOD: NLM's Native American outreach is assessed in light of the presentations at a community-based health information outreach symposium and the goals set by NLM's plan to reduce health disparities. RESULTS: NLM's current portfolio of Native American outreach projects appears most advanced in meeting the goal set in area 1 of the health disparities plan, "Promote use of health information by health professionals and the public." NLM's portfolio also shows significant strength and good progress regarding area 2 of the plan, "Expand partnerships among various types of libraries and community-based organizations." The portfolio is weaker in area 3, "Conduct and support informatics research." More knowledge-building efforts would benefit NLM, the National Network of Libraries of Medicine, and Native American and community-based organizations. IMPLICATIONS: The current Native American outreach portfolio should be continued, but new approaches are needed for evaluating Native American outreach and for forging collaborations with Native American groups, approaches grounded in consultation and mutual understanding of needs and perspectives.