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11 September 2017 (online)
It is a great honor for me to write the president’s statement for 2017 IMIA Year Book on ‘Learning from experience: Secondary use of patient data’ as a special topic.
Healthcare providers around the world record millions of patients’ health information in electronic health records (EHRs) every day. Researchers are using data from EHRs to answer their research questions on health services and public health. As the researchers extract knowledge from data collected during routine patient care and turn that knowledge into guidance for healthcare providers to use at the point of care, they help create what Lowrance called “learning from experience”, [] and the Institute of Medicine called “learning health care systems”[]. Learning from experience in healthcare is a process with a series of continuous and iterative cycles - patient data is collected from clinical encounters, data is aggregated and analyzed, outcomes are evaluated, evidence is used to inform changes in care delivery, and practice is adjusted as needed for continual improvement [, ].
Since learning from experience studies real world patient care experiences, it can provide feedback to improve real world patient care experiences. It can enrich the findings of randomized control trials by allowing the study of subgroups of patients that can’t be studied in a controlled trial. It can also help to find patterns of diagnostic accuracy, and assess conformity of practice with guidance by allowing working back from outcomes. Government agencies, health care organizations, and private companies are using data from EHRs and administrative claims to predict the risk of certain disease or adverse events, to conduct comparative effectiveness research, and to develop clinical practice guidelines and decision support tools for practicing clinicians. Research funding agencies are beginning to fund researches, which mine the data drawn from EHRs to advance medical knowledge. With the widespread adoption of health IT, the digital capture of health data, and big data analytics, the opportunities for learning from experience will only increase.
To foster learning from experience, a paradigm shift in healthcare is needed with continuous feedback loops between research and practice, and evidence and learning flowing in both directions. Whether these kinds of research involve a clinician using electronic databases to find an answer to his research problem or a data scientist using automated rules to identify patterns and trends in clinical big data, it requires informatics and data science for real time capture of the patient care experience, generation of knowledge, and access to knowledge.
- 1 Lowrance WW. Learning from experience: privacy and the secondary use of data in health research. J Biolaw Bus 2003; 06 (04) 30-60.
- 2 Institute of Medicine. Best care at lower cost: the path to continuously learning health care in America. Smith M, Saunders R, Stuckhardt L, McGinnis JM. editors. Washington (DC): The National Academies Press; 2013. Available from: http://nap.edu/13444
- 3 Greene SM, Reid RJ, Larson EB. Implementing the learning health system: from concept to action. Ann Intern Med 2012; 157 (03) 207-10.
- 4 Raghupathi W, Raghupathi V. Big data analytics in healthcare: promise and potential. Health Inf Sci Syst 2014; 02: 3.
- 5 Rentzepopoulos P. Secondary Use of Health Data for Medical Research and Public Health. eHealth Procurers Forum. https://joinup.ec.europa.eu/community/ehealthprocurers/document/secondaryuse-health-data-medical-research-and-public-health
- 6 Office of the National Coordinator for Health Information Technology. Connecting health and care for the nation: a shared nationwide interoperability roadmap. Washington (DC): ONC; 2015. Oct. Available at: https://www.healthit.gov/sites/default/files/hie-interoperability/nationwide-interoperability-roadmap-final-version-1.0.pdf
- 7 Foley T, Fairmicheal F. The potential of learning healthcare systems. The Learning Healthcare Project. 2015 Available from http://www.learn-inghealthcareproject.org/LHS_Report_2015.pdf
- 8 Seid M, Margolis PA, Opipari-Arrigan L. Engagement, Peer Production, and the Learning Healthcare System. JAMA Pediatr 2014; 168 (03) 201-2.