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From Intervention Informatics to Prevention Informatics: Lessons & Opportunities for Research Sherrilynne Fuller, MLS, PhD Professor, Biomedical & Health.

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Presentation on theme: "From Intervention Informatics to Prevention Informatics: Lessons & Opportunities for Research Sherrilynne Fuller, MLS, PhD Professor, Biomedical & Health."— Presentation transcript:

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

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

3 Role of Medical Care in 20 th Century Public Health Achievements* Public Health AchievementDue to Medical Care? VaccinationIndirect Motor-vehicle safetyNo Safer workplacesNo Control of infectious diseases+/- Coronary heart disease/stroke deaths +/- Safer and healthier foodsNo Healthier mothers and babies+/- Family planningNo Safer drinking waterNo Recognition of tobacco as health hazardNo *Rear Admiral Patrick OCarroll, 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 countrys 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) Center for Public Health Informatics University of Washington SFuller 2011 New York Times – June 5, 2010

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

6 Prevention Consultations Center for Public Health Informatics University of Washington SFuller 2011 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

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

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. …. Center for Public Health Informatics University of Washington SFuller 2011 Hackett LW. 1937. Malaria in Europe: An Ecological Study. Oxford, UK: Oxford University Press.

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

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 Adapted from InStedd.org Center for Public Health Informatics University of Washington SFuller 2011

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 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. Classification Systems: Building Blocks for Information Systems Center for Public Health Informatics University of Washington SFuller 2011

18 William Farr (1837) Center for Public Health Informatics University of Washington SFuller 2011 Sources: http://www.who.int/classifications/icd/en/HistoryOfICD.pdf 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.

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 Center for Public Health Informatics University of Washington 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

24 Center for Public Health Informatics University of Washington SFuller 2011

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 Predict Infectious Disease Outbreaks Center for Public Health Informatics University of Washington SFuller 2011 Anyamba A et al Proc. Natl Acad Sci 2009:106(3):955-959

28 Data Coordination – Mekong Basin Region

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

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

31 Center for Public Health Informatics University of Washington SFuller 2011

32 Google Public Data Explorer Tool

33 Volunteered Geographic Information for 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 Center for Public Health Informatics University of Washington SFuller 2011 *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)

34 Center for Public Health Informatics University of Washington SFuller 2011

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36 MOBILE TECHNOLOGIES: Faster and more reliable data collection and sharing for decision making by health providers as well as consumers 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

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

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

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 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


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