Big Data Science: Opportunities and Challenges to Address Minority Health and Health Disparities in the 21st Century.

Addressing minority health and health disparities has been a missing piece of the puzzle in Big Data science. This article focuses on three priority opportunities that Big Data science may offer to the reduction of health and health care disparities. One opportunity is to incorporate standardized information on demographic and social determinants in electronic health records in order to target ways to improve quality of care for the most disadvantaged populations over time. A second opportunity is to enhance public health surveillance by linking geographical variables and social determinants of health for geographically defined populations to clinical data and health outcomes. Third and most importantly, Big Data science may lead to a better understanding of the etiology of health disparities and understanding of minority health in order to guide intervention development. However, the promise of Big Data needs to be considered in light of significant challenges that threaten to widen health disparities. Care must be taken to incorporate diverse populations to realize the potential benefits. Specific recommendations include investing in data collection on small sample populations, building a diverse workforce pipeline for data science, actively seeking to reduce digital divides, developing novel ways to assure digital data privacy for small populations, and promoting widespread data sharing to benefit under-resourced minority-serving institutions and minority researchers. With deliberate efforts, Big Data presents a dramatic opportunity for reducing health disparities but without active engagement, it risks further widening them.

Web evaluation at the US National Institutes of Health: use of the American Customer Satisfaction Index online customer survey.

BACKGROUND: The National Institutes of Health (NIH), US Department of Health and Human Services (HHS), realized the need to better understand its Web users in order to help assure that websites are user friendly and well designed for effective information dissemination. A trans-NIH group proposed a trans-NIH project to implement an online customer survey, known as the American Customer Satisfaction Index (ACSI) survey, on a large number of NIH websites-the first "enterprise-wide" ACSI application, and probably the largest enterprise Web evaluation of any kind, in the US government. The proposal was funded by the NIH Evaluation Set-Aside Program for two years at a cost of US $1.5 million (US $1.275 million for survey licenses for 60 websites at US $18000 per website; US $225,000 for a project evaluation contractor). OBJECTIVE: The overall project objectives were to assess the value added to the participating NIH websites of using the ACSI online survey, identify any NIH-wide benefits (and limitations) of the ACSI, ascertain any new understanding about the NIH Web presence based on ACSI survey results, and evaluate the effectiveness of a trans-NIH approach to Web evaluation. This was not an experimental study and was not intended to evaluate the ACSI survey methodology, per se, or the impacts of its use on customer satisfaction with NIH websites. METHODS: The evaluation methodology included baseline pre-project websites profiles; before and after email surveys of participating website teams; interviews with a representative cross-section of website staff; observations of debriefing meetings with website teams; observations at quarterly trans-NIH Web staff meetings and biweekly trans-NIH leadership team meetings; and review and analysis of secondary data. RESULTS: Of the original 60 NIH websites signed up, 55 implemented the ACSI survey, 42 generated sufficient data for formal reporting of survey results for their sites, and 51 completed the final project survey. A broad cross-section of websites participated, and a majority reported significant benefits and new knowledge gained from the ACSI survey results. NIH websites as a group scored consistently higher on overall customer satisfaction relative to US government-wide and private sector benchmarks. CONCLUSIONS: Overall, the enterprise-wide experiment was successful. On the level of individual websites, the project confirmed the value of online customer surveys as a Web evaluation method. The evaluation results indicated that successful use of the ACSI, whether site-by-site or enterprise-wide, depends in large part on strong staff and management support and adequate funding and time for the use of such evaluative methods. In the age of Web-based e-government, a broad commitment to Web evaluation may well be needed. This commitment would help assure that the potential of the Web and other information technologies to improve customer and citizen satisfaction is fully realized.

MedlinePlus and the challenge of low health literacy: findings from the Colonias project.

OBJECTIVE: To explore the potential of a community-based health information outreach project to overcome problems associated with health literacy in low-income Hispanic communities along the Texas-Mexico border. METHODS: Using a train-the-trainer approach, community outreach workers known as promotoras were trained by a health information outreach team to search English and Spanish versions of MedlinePlus. These 15 promotoras submitted written examples on a weekly basis of the topics they helped residents explore on MedlinePlus and the ways in which the residents used the information. These weekly reports, along with verbal interviews with promotoras and others in the communities, allowed development of a database of 161 incidents ("stories") demonstrating how community residents used MedlinePlus. These stories were thematically analyzed to explore how the program benefited participants. RESULTS: The database of stories included examples of community residents becoming better informed about their illnesses, resolving to visit doctors, making decisions about recommended treatments, reducing their anxiety about health conditions, committing to healthy or preventive behavior, and assisting family members. CONCLUSION: With the help of paraprofessionals like promotoras, community-based health information outreach projects may improve the ability of community residents to understand their health conditions and to participate actively in their health care.

Use of Internet audience measurement data to gauge market share for online health information services.

BACKGROUND: The transition to a largely Internet and Web-based environment for dissemination of health information has changed the health information landscape and the framework for evaluation of such activities. A multidimensional evaluative approach is needed. OBJECTIVE: This paper discusses one important dimension of Web evaluation-usage data. In particular, we discuss the collection and analysis of external data on website usage in order to develop a better understanding of the health information (and related US government information) market space, and to estimate the market share or relative levels of usage for National Library of Medicine (NLM) and National Institutes of Health (NIH) websites compared to other health information providers. METHODS: The primary method presented is Internet audience measurement based on Web usage by external panels of users and assembled by private vendors-in this case, comScore. A secondary method discussed is Web usage based on Web log software data. The principle metrics for both methods are unique visitors and total pages downloaded per month. RESULTS: NLM websites (primarily MedlinePlus and PubMed) account for 55% to 80% of total NIH website usage depending on the metric used. In turn, NIH.gov top-level domain usage (inclusive of NLM) ranks second only behind WebMD in the US domestic home health information market and ranks first on a global basis. NIH.gov consistently ranks among the top three or four US government top-level domains based on global Web usage. On a site-specific basis, the top health information websites in terms of global usage appear to be WebMD, MSN Health, PubMed, Yahoo! Health, AOL Health, and MedlinePlus. Based on MedlinePlus Web log data and external Internet audience measurement data, the three most heavily used cancer-centric websites appear to be www.cancer.gov (National Cancer Institute), www.cancer.org (American Cancer Society), and www.breastcancer.org (non-profit organization). CONCLUSIONS: Internet audience measurement has proven useful to NLM, with significant advantages compared to sole reliance on usage data from Web log software. Internet audience data has helped NLM better understand the relative usage of NLM and NIH websites in the intersection of the health information and US government information market sectors, which is the primary market intersector for NLM and NIH. However important, Web usage is only one dimension of a complete Web evaluation framework, and other primary research methods, such as online user surveys, usability tests, and focus groups, are also important for comprehensive evaluation that includes qualitative elements, such as user satisfaction and user friendliness, as well as quantitative indicators of website usage.

High school peer tutors teach MedlinePlus: a model for Hispanic outreach.

OBJECTIVES: The objective was to introduce the MedlinePlus Website to the predominantly Hispanic residents of the Lower Rio Grande Valley region of Texas by partnering with a health professions magnet high school (known as Med High). METHODS: Community assessment was used in the planning stages and included pre-project focus groups with students and teachers. Outreach methods included peer tutor selection, train-the-trainer sessions, school and community outreach, and pre- and posttests of MedlinePlus training sessions. Evaluation methods included Web statistics; end-of-project interviews; focus groups with students, faculty, and librarians; and end-of-project surveys of students and faculty. RESULTS: Four peer tutors reached more than 2,000 people during the project year. Students and faculty found MedlinePlus to be a useful resource. Faculty and librarians developed new or revised teaching methods incorporating MedlinePlus. The project enhanced the role of school librarians as agents of change at Med High. The project continues on a self-sustaining basis. CONCLUSIONS: Using peer tutors is an effective way to educate high school students about health information resources and, through the students, to reach families and community members.

Tribal connections health information outreach: results, evaluation, and challenges.

In 1997, the National Library of Medicine (NLM), a component of the National Institutes of Health (NIH), initiated a program of intensified outreach to Native Americans, initially focusing on the Pacific Northwest in collaboration with the Pacific Northwest Regional Medical Library (PNRML). This initiative, known as the Tribal Connections Project, emphasized the establishment or strengthening of Internet connections at select Indian reservations and Alaska Native villages and related needs assessment and training. The hope was that these efforts would improve tribal access to health information available via the Internet and the Web. Phase I included sixteen tribal sites--eight in Washington, four in Alaska, two in Montana, and one each in Oregon and Idaho. Phase I results indicate that the project was successful in assessing local needs and building awareness of the Internet, forging new partnerships with and between the participating Indian reservations and Alaska Native villages and other organizations, making real improvements in the information technology (IT) infrastructure and Internet connectivity at fifteen of sixteen sites, and conducting training sessions with several hundred tribal participants across thirteen sites. Most importantly, the project demonstrated the key role of tribal community involvement and empowerment and contributed to development of an outreach evaluation field manual and the evolving concept of community-based outreach. The knowledge gained from Tribal Connections Project Phase I is helping refine and enhance subsequent NLM-sponsored tribal connections and similar community outreach efforts.

Program management and policy issues in information outreach: lessons from Tribal Connections.

With the advent of the Internet, American Indian/Alaska Native (AI/AN) communities in the Pacific Northwest have new opportunities to access high quality and relevant health information. The Pacific Northwest Regional Medical Library (PNRML), regional headquarters of the National Network of Libraries of Medicine, a program sponsored by the National Library of Medicine, sought to facilitate that access and worked with a selected group of sixteen tribes and native village consortia. The steps were: (1) work with AI/AN communities to arrive at mutually-agreeable health information connectivity objectives and long-term solutions, (2) provide funding to AI/AN communities to ensure Internet connectivity and the presence of Internet workstations for health workers and for the public, and (3) train in effective health information seeking. Community-based approaches helped the PNRML adjust policies and practice for improved information outreach to AI/AN communities in the region. The project participants, collaborating with our staff, successfully carried out many of the community goals and, at the same time, we gained insight about the variables that were barriers or facilitators of success. While we are coming at outreach from a library perspective, the policy and method lessons we learned could apply to a broad variety of outreach endeavors.