From Intervention Informatics to Prevention Informatics: Lessons & Opportunities for Research

1. From Intervention Informatics to Prevention Informatics:Lessons & Opportunities for Research American Society for Information Science and Technology Lecture Series Award 2010 First Annual Lecture, April 11, 2011 School of Library and Information Science, University of Kentucky Lexington, Kentucky Sherrilynne Fuller, MLS, PhD Professor, Biomedical & Health Informatics School of Medicine and Information School (Joint) Co-Director, Center for Public Health Informatics and Senior Advisor, Dean, University Libraries University of Washington, Seattle, WA Center for Public Health Informatics University of Washington SFuller 2011

2. Center for Public Health Informatics University of Washington SFuller 2011 Souce: Rear Admiral Patrick O’Carroll, Region 10 Health Administrator

3. Role of Medical Care in 20th Century Public Health Achievements* *Rear Admiral Patrick O’Carroll, Region X Health Administrator

4. Healthcare Costs Versus Results • How the United States compares with other O.E.C.D. (Organization for Economic Cooperation and Development) members • A country’s wealth usually dictates how much money it spends on health care, but spending in the United States is far beyond that of its peer countries. • Health care spending as a percentage of gross domestic product (2007) New York Times – June 5, 2010 Center for Public Health Informatics University of Washington SFuller 2011

5. Life Expectancy at Birth New York Times – June 5, 2010 Center for Public Health Informatics University of Washington SFuller 2011

6. Prevention Consultations United States lags in basic preventive care, like annual checkups, and relies heavily on expensive specialists rather than primary care practitioners Number of primary care visits/yearY New York Times – June 5, 2010 Center for Public Health Informatics University of Washington SFuller 2011

7. “Risky Trade”* Global Express: “the system that connects us across oceans, continents, national boundaries, cultures, languages, groups, ethnicity and trade systems” *Kimball AM. Risky Trade: Infectious Disease in the Era of Global Trade. Ashgate, 2006 Center for Public Health Informatics University of Washington SFuller 2011

8. Trade Routes &Cholera Epidemics – 1892* *Proust, A. (1892). La defense de L'Europe contre le cholera. Paris, G. Masson. Center for Public Health Informatics University of Washington SFuller 2011

9. US Malaria Deaths, 1870 Center for Public Health Informatics University of Washington SFuller 2011

10. Complexity…. “Everything about malaria is so molded by local conditions that it becomes a thousand epidemiological puzzles. Like chess, it is played with a few pieces but is capable of an infinite variety of situations.” …. Hackett LW. 1937. Malaria in Europe: An Ecological Study. Oxford, UK: Oxford University Press. Center for Public Health Informatics University of Washington SFuller 2011

11. Why Are Global Prevention Information Systems Critical? • New viruses travel more rapidly, transforming local afflictions into worldwide epidemics; increase in new and re-emerging infectious diseases -- 70% of which are zoonoses • A modern lifestyle that travels just as fast, contributing to swelling epidemics of non-communicable diseases • A human resources crisis directly linked to transnational labor, economics, migration and natural disasters • The growth of vertical (e.g. HIV/AIDS, TB, malaria) initiatives has pushed advances for specific diseases but has also put pressure on individual countries’ public health systems • Preventing and responding to these threats requires rapid and targeted exchange of accurate and detailed health information Adapted from: AM Kimball, Risky Trade: Infectious Disease in the Era of Global Trade. Ashgate, 2006 Center for Public Health Informatics University of Washington SFuller 2011

12. Definitions Adapted from Shortliffe, 2006 and Hersh, 2007. Center for Public Health Informatics University of Washington SFuller 2011

13. Definitions Intervention Informatics: • Focus: • Individual • Patient with injury, disease, abnormal condition • Track: actions, procedures, diagnoses, therapies • Reactive – after the health problem occurs • Lacks Context: • Community (rural, urban, agricultural, inner city) • Family members/relationships • Individual (home, travel, hobbies, etc. .) Center for Public Health Informatics University of Washington SFuller 2011

14. Definitions Prevention Informatics: Focus: • Individual in context: family, community, the world • Health & well-being of individual & populations • Safe environment • Hospital (preventing medical errors) • Home (water & sanitation) • Work (preventing injuries) • Roads and travel conveyances • Proactive • Highly data-intensive and data-driven Center for Public Health Informatics University of Washington SFuller 2011

15. Core Challenge: The Data Silo Problem Center for Public Health Informatics University of Washington SFuller 2011 Adapted from InStedd.org

16. New and Improved Approaches to Old Information Challenges in Prevention • Classification, thesauri and ontologies • Knowledge management • Disease outbreak event detection and prevention systems utilizing: • satellite data • news media, published reports • crowd-sourcing • Mobile technologies Center for Public Health Informatics University of Washington SFuller 2011

17. Classification Systems: Building Blocks for Information Systems • What do these have in common? • seventeenth-century mortality table whose causes of death include "fainted in a bath," "frighted," and "itch"); • the assignment of subject headings to books in a library; • and the separation of machine-washable clothes from hand-washables have in common?? • All, of course, are examples of classification – upon which information systems of all types are built. Center for Public Health Informatics University of Washington SFuller 2011

18. William Farr (1837) “The advantages of a uniform statistical nomenclature, however imperfect, are so obvious, that it is surprising no attention has been paid to its enforcement in Bills of Mortality. Each disease has, in many instances, been denoted by three or four terms, and each term has been applied to as many different diseases: vague, inconvenient names have been employed, or complications have been registered instead of primary diseases… The nomenclature is of as much importance in this department of inquiry as weights and measures in the physical sciences, and should be settled without delay.” Sources: http://www.who.int/classifications/icd/en/HistoryOfICD.pdf Center for Public Health Informatics University of Washington SFuller 2011

19. International Classification of Diseases (ICD9, 10….) • Inconsistency • Lack of concept permanence • Disregard for context • Language translation • Slow adaptation to new/emerging disease terminology Cimino JJ. Desiderata for controlled medical vocabularies in the twenty-first century. Methods Inf Med. 1998 Nov;37(4-5):394-403 . Center for Public Health Informatics University of Washington SFuller 2011

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22. Knowledge Management Challenge Neither the creation nor the distribution of information resources* upon which public health practitioners depend is managed or presented in any systematic or comprehensive way at the present time** *data of all types, guidelines, research findings, maps, policies, laws, evaluation metrics, teaching materials, etc. **Revere, D., A. M. Turner,… Fuller, SF. (2007). "Understanding the information needs of public health practitioners: a literature review to inform design of an interactive digital knowledge management system." J Biomed Inform 40(4): 410-21. Center for Public Health Informatics University of Washington SFuller 2011

23. Knowledge Management Approach Research workflow and information needs of public health practitioners for decision support Develop and optimize a knowledge management system to support iterative refinement of a set of retrieval and information management tools for public health practitioners Center for Public Health Informatics University of Washington

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25. Clinical Public Health Information Interchange – Research Questions • Clinical information to support chronic and infectious disease interventions in communities: what is the minimum data set? • PH clinical data (e.g. immunization, disease status, relevant community information) to electronic health record (EHR)? • Timely approaches to people (care providers) and directory type information interchange? • Research finding: how to extract from the literature and present to practitioners? • Utilization of community health information for decision support for individual patients? Center for Public Health Informatics University of Washington SFuller 2011

26. Disease Outbreak Detection and Prevention Systems: Mapping • Satellite data; airline data; non-prescription drug purchases • News media, published reports from local newspapers • Internet activity -- google concepts searches • Citizen-reported information Center for Public Health Informatics University of Washington SFuller 2011

27. Using Satellite Data to PredictInfectious Disease Outbreaks Anyamba A et al Proc. Natl Acad Sci 2009:106(3):955-959 Center for Public Health Informatics University of Washington SFuller 2011

28. Data Coordination – Mekong Basin Region

29. Healthmap.org Center for Public Health Informatics University of Washington SFuller 2011

30. USING AIRLINE DATA TO PREDICT EMERGING INFECTIOUS DISEASE TRANSMISSION Biodiaspora.com Center for Public Health Informatics University of Washington SFuller 2011

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32. Google Public Data Explorer Tool Center for Public Health Informatics University of Washington SFuller 2011

33. Volunteered Geographic Informationfor Disaster Relief: Harnessing the Wisdom and Power of the Public A Case Study of the Haitian Earthquake* • Lack of detailed maps for emergency response led to the use of crowd-sourced contributions to build critical maps *Zook, M University of Kentucky; Graham M University of Oxford; Shelton T University of Kentucky; Gorman, S FortiusOne. World Medical & Health Policy Vol. 2: Iss. 2, Article 2 (2010) Center for Public Health Informatics University of Washington SFuller 2011

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36. Faster and more reliable data collection and sharing for decision making by health providers as well as consumers MOBILE Technologies: Center for Public Health Informatics University of Washington SFuller 2011

37. OpenData Kit (ODK)* • Lack of reliable infrastructure makes data collection difficult • Paper is still primary way data is collected around the world • ODK – open-source (non-proprietary) suite of tools for using mobile devices to collect, visualize and share data *ODK=developed at University of Washington http://change.washington.edu/projects/odk Center for Public Health Informatics University of Washington SFuller 2011

38. Paper-based Systems Center for Public Health Informatics University of Washington SFuller 2011

39. OpenData Kit (ODK) for Mobile Data Collection Center for Public Health Informatics University of Washington SFuller 2011

40. Summary: Research Opportunities Abound • Improved vocabularies, thesauri and ontologies of concepts are transforming ability to aggregate data and information across disparate information resources and databases • Enhanced collection techniques and new combinations of data and information to: • Generate new hypothesis and approaches to preventing infectious disease outbreaks • Respond more rapidly to natural disasters and human-caused emergencies • Support two-way communications with individuals Center for Public Health Informatics University of Washington SFuller 2011

41. Summary:Research Opportunities Abound • Opportunity to optimize timely data exchange of critical information between clinical and public health information systems to improve quality of response for individual and community health • Citizen generated information offers new means to respond to disasters as well as offer communities of practice to support resource-constrained environments • With the availability of instant communications need to recognize and prepare for unexpected “crowd” reactions to threats Center for Public Health Informatics University of Washington SFuller 2011

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43. Resources 1. Fuller, S. (2010). "Tracking the Global Express: new tools addressing disease threats across the world." Epidemiology. 21(6): 769-771. 2. Proust A. La Defense de L’Europe Contre le Cholera. Paris: Masson; 1892. 3. Kimball A. Risky Trade: Infectious Disease in the Era of Global Trade. Aldershot, United Kingdom: Ashgate Publishing; 2006. 4. Brown C. Emerging diseases: the global express. Vet Pathol. 2010;47: 9–14. Center for Public Health Informatics University of Washington SFuller 2011

44. Resources 5. Chretien JP, Burkom HS, Sedyaningsih ER, et al. Syndromic surveillance: adapting innovations to developing settings. PLoS Med. 2008;5:e72. 6. Brownstein JS, Freifield CC, Madoff LC. Digital disease detection—harnessing the web for public health surveillance. N Engl J Med. 2009;360:2153–21576.. 7. Mekong Basin Disease Surveillance Network. Available at: http://www.mbdsoffice.com/index_2008.php. Accessed July 31, 2010. . Center for Public Health Informatics University of Washington SFuller 2011

45. Resources 8. Open Data Kit (ODK)—open source tools for collecting, managing and retrieving data. Available at: http://change.washington.edu/projects/odk. 9. GeoChat—an open source, group communications technology. Available at: http://instedd.org/geochat. 10. Ushahidi—an open source tool for information collection, visualization and interactive mapping. Available at: http://www.ushahidi.com/. Center for Public Health Informatics University of Washington SFuller 2011

46. Resources 11. Yi Q, H. R., Hillringhouse EA, Sorensen SS, Oberle MW, Fuller SS, Wallace and JC. (2008). "Integrating open-source technologies to build low-cost information systems for improved access to public health data. ." Int J Health Geogr. 2008 Jun 9;7:29 7: 29-. 12. Zook M, Graham M, Shelton T, et al. Volunteered geographic information and crowdsourcing disaster relief: a case study of the Haitian earthquake. World Med Health Policy. 2010;2:2. Available at: http://www.psocommons.org/wmhp/vol2/iss2/art2 Center for Public Health Informatics University of Washington SFuller 2011

47. Resources 13. US Malaria Deaths, 1870 - The Scientist - Magazine of the Life Sciences  (http://www.the-scientist.com/article/display/57476/#ixzz1HBiuunjp) 14. Revere, D., A. M. Turner,… Fuller, S. (2007). "Understanding the information needs of public health practitioners: a literature review to inform design of an interactive digital knowledge management system." J Biomed Inform 40(4): 410-21. Center for Public Health Informatics University of Washington SFuller 2011