Representation of People’s Decisions in Health Information Systems^[*]

Summary

Objectives: In this study, we aimed: 1) to conceptualize the theoretical challenges facing health information systems (HIS) to represent patients’ decisions about health and medical treatments in everyday life; 2) to suggest approaches for modeling these processes.

Methods: The conceptualization of the theoretical and methodological challenges was discussed in 2015 during a series of interdisciplinary meetings attended by health informatics staff, epidemiologists and health professionals working in quality management and primary and secondary prevention of chronic diseases of the Hospital Italiano de Buenos Aires, together with sociologists, anthropologists and e-health stakeholders.

Results: HIS are facing the need and challenge to represent social human processes based on constructive and complexity theories, which are the current frameworks of human sciences for understanding human learning and socio-cultural changes. Computer systems based on these theories can model processes of social construction of concrete and subjective entities and the interrelationships between them. These theories could be implemented, among other ways, through the mapping of health assets, analysis of social impact through community trials and modeling of complexity with system simulation tools.

Conclusions: This analysis suggested the need to complement the traditional linear causal explanations of disease onset (and treatments) that are the bases for models of analysis of HIS with constructive and complexity frameworks. Both may enlighten the complex interrelationships among patients, health services and the health system. The aim of this strategy is to clarify people’s decision making processes to improve the efficiency, quality and equity of the health services and the health system.

Keywords

Population health - learning health systems - health information systems - complex systems thinking - social theory

^* Written and extended version of a keynote lecture the first author gave at Medinfo 2015 in Sao Paulo, Brazil.

• Literatur

• 1 Rosenbaum S. The Patient Protection and Affordable Care Act: implications for public health policy and practice. Public Health Rep 2011; 126 (Suppl. 01) 130-135.
• 2 Shaw FE, Asomugha CN, Conway PH, Rein AS. The Patient Protection and Affordable Care Act: opportunities for prevention and public health. Lancet 2014; 384 9937 75-82.
• 3 Berg M, Goorman E. The contextual nature of medical information. Int J Med Inform 1999; 56 1-3 51-60.
• 4 Middleton B. The clinical decision support consortium. Stud Health Technol Inform 2009; 150: 26-30.
• 5 Harding AJ, Sanders F, Lara AM, van Teijlingen ER, Wood C, Galpin D. et al. Patient choice for older people in english NHS primary care: theory and practice. ISRN Family Med 2014; 2014: 742676.
• 6 Latoszek-Berendsen A, Tange H, van den Herik HJ, Hasman A. From clinical practice guidelines to computer-interpretable guidelines. A literature overview. Methods Inf Med 2010; 49 (Suppl. 06) 550-570.
• 7 Ainsworth J, Buchan I. Combining Health Data Uses to Ignite Health System Learning. Methods Inf Med 2015; 54 (Suppl. 06) 479-487.
• 8 Delaney BC, Curcin V, Andreasson A, Arvanitis TN, Bastiaens H, Corrigan D. et al. Translational Medicine and Patient Safety in Europe: TRANSFoRm-Architecture for the Learning Health System in Europe. Biomed Res Int 2015; 2015: 961526.
• 9 IOM Committee on the Learning Health Care System in America.. Best care at lower cost. The Path to Continuously Learning Health Care in America. Washington DC: Institute of Medicine, of the National Academies. The National Academic Press;; 2013
• 10 McCarthy DB, Propp K, Cohen A, Sabharwal R, Schachter AA, Rein AL. Learning from health information exchange technical architecture and implementation in seven beacon communities. EGEMS (Wash DC) 2014; 2 (Suppl. 01) 1060.
• 11 Bernstein JA, Friedman C, Jacobson P, Rubin JC. Ensuring public health’s future in a national-scale learning health system. Am J Prev Med 2015; 48 (Suppl. 04) 480-487.
• 12 Yu PP, Hoffman MA, Hayes DF. Biomarkers and oncology: the path forward to a learning health system. Arch Pathol Lab Med 2015; 139 (Suppl. 04) 451-6.
• 13 IOM Committee on the Learning Health Care System in America.. Engaging Patients, Families, and Communities. In: Best care at lower cost. The Path to Continuously Learning Health Care in America. Washington DC: Institute of Medicine, of the National Academies. The National Academic Press; 2013. p. 189-226.
• 14 Marsolo K, Margolis PA, Forrest CB, Colletti RB, Hutton JJ. A Digital Architecture for a Network-Based Learning Health System: Integrating Chronic Care Management, Quality Improvement, and Research. EGEMS (Wash DC) 2015; 3 (Suppl. 01) 1168.
• 15 Arsoniadis EG, Tambyraja R, Khairat S, Jahansouz C, Scheppmann D, Kwaan MR. et al. Characterizing Patient-Generated Clinical Data and Associated Implications for Electronic Health Records. Stud Health Technol Inform 2015; 216: 158-162.
• 16 Martinez-Perez B, de la Torre-Diez I, Lopez-Co-ronado M, Sainz-De-Abajo B. Comparison of mobile apps for the leading causes of death among different income zones: a review of the literature and app stores. JMIR Mhealth Uhealth 2014; 2 (Suppl. 01) e1.
• 17 Telehealth for Patients with Heart Failure: A Review of the Clinical Effectiveness, Cost-effectiveness and Guidelines, in CADTH Rapid Response Reports. Ottawa: Canadian Agency for Drug and Technologies in Health; 2015
• 18 Ammenwerth E, Woess S, Baumgartner C, Fetz B, van der Heidt A, Kastner P. et al. Evaluation of an Integrated Telemonitoring Surveillance System in Patients with Coronary Heart Disease. Methods Inf Med 2015; 54 (Suppl. 05) 388-397.
• 19 Aguilar-Martinez A, Sole-Sedeno JM, Mancebo-Moreno G, Medina FX, Carreras-Collado R, Saigi-Rubio F. Use of mobile phones as a tool for weight loss: a systematic review. J Telemed Telecare 2014; 20 (Suppl. 06) 339-349.
• 20 Figar S, Galarza C, Petrlik E, Hornstein L, Rodriguez Loria G, Waisman G. et al. Effect of education on blood pressure control in elderly persons: a randomized controlled trial. Am J Hypertens 2006; 19 (Suppl. 07) 737-743.
• 21 Figar S, Waisman G, De Quiros FG, Galarza C, Marchetti M, Loria GR. et al. Narrowing the gap in hypertension: effectiveness of a complex antihy-pertensive program in the elderly. Dis Manag 2004; 7 (Suppl. 03) 235-243.
• 22 Coomes CM, Lewis MA, Uhrig JD, Furberg RD, Harris JL, Bann CM. Beyond reminders: a conceptual framework for using short message service to promote prevention and improve healthcare quality and clinical outcomes for people living with HIV AIDS. Care 2012; 24 (Suppl. 03) 348-357.
• 23 González Bernaldo de Quirós F, Luna D, Baum A, Plazzotta F, Otero C, Benítez S. Incorporación de tecnologías de la información y de las comunicaciones en el Hospital Italiano de Buenos Aires. Santiago de Chile: Comisión Económica para América Latina y el Caribe (CEPAL); 2012. Spanish.
• 24 National Conference of State Legislatures.. Public Health and Cost Savings. NCSL Briefs for State Legislators. No. 14. In: Legislatures NCoS, Editor.. NCSL’s Health Cost Containment and Efficiency Series National Conference of State Legislatures. Denver, Colorado: 2011
• 25 IOM (Institute of Medicine).. Capturing social and behavioral domains and measures in electronic health records. Phase 2. Washington, DC.: Institute of Medicine, of the National Academies. The National Academic Press;; 2014
• 26 Pantell M, Rehkopf D, Jutte D, Syme SL, Balmes J, Adler N. Social isolation: a predictor of mortality comparable to traditional clinical risk factors. Am J Public Health 2013; 103 (Suppl. 11) 2056-2062.
• 27 Adler NE, Stead WW. Patients in context - EHR capture of social and behavioral determinants of health. N Engl J Med 2015; 372 (Suppl. 08) 698-701.
• 28 Chetty R, Stepner M, Abraham S, Lin S, Scuderi B, Turner N. et al. The Association Between Income and Life Expectancy in the United States, 2001-2014. Jama 2016; 315 (Suppl. 16) 1750-1766.
• 29 Bridges J, Hughes J, Farrington N, Richardson A. Cancer treatment decision-making processes for older patients with complex needs: a qualitative study. BMJ Open 2015; 5 (Suppl. 12) e009674.
• 30 Musso CG, Vilas M, de Quiros FG, Nunez JF. The Importance of Evaluating Frailty and Social-behavioral Factors for Managing Drugs and Dialysis Prescription in Elderly Patients. Drug Res (Stuttg) 2015; 66 (Suppl. 04) 223-224.
• 31 Doolittle P. Complex Constructivism: a theoretical model of complexity and congnition. International Journal of Teaching and Learning in Higher Education 2014; 26 (Suppl. 03) 485-498.
• 32 Ladyman J, Lambert J, Wiesner K. What is a complex system?. Eur J Phil Sci 2013; 3: 33-67.
• 33 Conrad P, Barker KK. The social construction of illness: key insights and policy implications. J Health Soc Behav 2010; 51 Suppl: S67-79.
• 34 Jones SS, Rudin RS, Perry T, Shekelle PG. Health information technology: an updated systematic review with a focus on meaningful use. Ann Intern Med 2014; 160 (Suppl. 01) 48-54.
• 35 Goldenberg MJ. On evidence and evidence-based medicine: lessons from the philosophy of science. Soc Sci Med 2006; 62 (Suppl. 11) 2621-2632.
• 36 Guba EG, Lincoln YS. Paradigmatic controversies, contradicions, and emerging confluences. In: Den-zin NK, Lincoln YS. editors. Handbook of Qualitative Research. 3rd ed. Thousand Oaks, CA: SAGE; 2005. p. 191-215.
• 37 Susser M, Susser E. Choosing a future for epidemiology: I. Eras and paradigms. Am J Public Health 1996; 86 (Suppl. 05) 668-673.
• 38 Kroelinger CD, Rankin KM, Chambers DA, Diez Roux AV, Hughes K, Grigorescu V. Using the principles of complex systems thinking and implementation science to enhance maternal and child health program planning and delivery. Matern Child Health J 2014; 18 (Suppl. 07) 1560-1564.
• 39 Proulx MJ, Todorov OS, Taylor Aiken A, de Sousa AA. Where am I? Who am I? The Relation Between Spatial Cognition, Social Cognition and Individual Differences in the Built Environment. Front Psychol 2016; 7: 64.
• 40 Goffman E. The Presentation of Self in Everyday Life. New York: Doubleday;; 1959
• 41 Berger P, Luckmann T. The Social Construction of Reality: A Treatise in the Sociology of Knowledge. New York: Anchor;; 1996
• 42 Ayres JR. Acerca del riesgo: para comprender la epidemiología. Buenos Aires: Lugar Editorial; 2005. Spanish.
• 43 Perodeau G, Grenon E, Grenier S, O’Connor K. Systemic model of chronic benzodiazepine use among mature adults. Aging Ment Health 2015; 20 (Suppl. 04) 380-390.
• 44 Morgan A, Ziglio E. Chapter 1. Revitalising the Public Health Evidence Base: An Asset Model. In: Morgan A, Davies M, Zigli E. editors. Health Assets in a Global Context: Theory, Methods, Action. New York: Springer Science+Business Media; 2010. p. 3-16.
• 45 Botello B, Palacio S, Garcia M, Margolles M, Fernandez F, Hernan M. et al. [Methodology for health assets mapping in a community]. Gac Sanit 2013; 27 (Suppl. 02) 180-183. Spanish.
• 46 Alvarez-Dardet C, Morgan A, Cantero MT, Hernan M. Improving the evidence base on public health assets--the way ahead: a proposed research agenda. J Epidemiol Community Health 2015; 69 (Suppl. 08) 721-723.
• 47 Crittenden KS, Kaponda CP, Jere DL, McCreary LL, Norr KF. Participation and diffusion effects of a peer-intervention for HIV prevention among adults in rural Malawi. Soc Sci Med 2015; 133: 136-144.
• 48 Harrell JS, McMurray RG, Gansky SA, Bangdiwala SI, Bradley CB. A public health vs a risk-based intervention to improve cardiovascular health in elementary school children: the Cardiovascular Health in Children Study. Am J Public Health 1999; 89 (Suppl. 10) 1529-1535.
• 49 Kramer MS, Chalmers B, Hodnett ED, Sevkovskaya Z, Dzikovich I, Shapiro S. et al. Promotion of Breastfeeding Intervention Trial (PROBIT): a randomized trial in the Republic of Belarus. Jama 2001; 285 (Suppl. 04) 413-420.
• 50 Applications of Complexity Science for Public Policy: New Tools for Finding Unanticipated Consequences and Unrealized Opportunities. OECD Global Science Forum. Erice, Sicily: 2009 Available from: http://www.oecd.org/dataoecd/44/41/43891980.pdf.
• 51 Higgins DL, Metzler M. Implementing community-based participatory research centers in diverse urban settings. J Urban Health 2001; 78 (Suppl. 03) 488-494.
• 52 Tapp H, White L, Steuerwald M, Dulin M. Use of community-based participatory research in primary care to improve healthcare outcomes and disparities in care. J Comp Eff Res 2013; 2 (Suppl. 04) 405-419.