Update on Data Reuse in Health Care

C. Safran

doi:10.15265/IY-2017-013

Yearbook of Medical Informatics, Table of Contents

Yearb Med Inform 2017; 26(01): 24-27
DOI: 10.15265/IY-2017-013

Special Section: Learning from Experience: Secondary Use of Patient Data

Survey

Georg Thieme Verlag KG Stuttgart

Update on Data Reuse in Health Care

C. Safran

¹Harvard Medical School, Boston, United States

› Author Affiliations

Abstract

Summary

Objective: Reuse of clinical data has broad use in clinical, research, governmental, and business settings. This summary provides an update on the benefits, barriers to use with large clinical databases, policy frameworks that have been formulated, and challenges.

Methods: This report highlights some recent publications on the diverse uses of clinical data and some policy initiatives to promote reuse. It also contains the opinions of the author.

Results: Although many examples of the benefits of data reuse have been documented, this summary also reviews why the quality of clinical data needs to be the focus of future informatics work.

Conclusion: The promise of reusing data outweighs potential risks, but concerns about privacy and the need to modernize our legal framework will be necessary to realize the full benefits of real-world evidence.

Keywords

EHR - electronic health records - big data - health policy - learning health systems - real world evidence

Full Text

References

References
1 Safran C. Reuse of Clinical Data. Yearb Med Inform 2014; 52-4.
2 Weng C, Kahn MG. Clinical Research Informatics for Big Data and Precision Medicine. Yearb Med Inform 2016; 211-8.
3 Weber GM, Mandl KD, Kohane IS. Finding the Missing Link for Big Biomedical Data. JAMA 2014; Jun 25; 311 (24) 2479-80.
4 Gundlapalli AV, Greaves WW, Kesler D, Murray P, Safran C, Lehmann CU. Clinical Informatics Board Specialty Certification for Physicians: A Global View. Stud Health Technol Inform 2015; 216: 501-5.
5 Learning Health Community. www.learninghealth.org (accessed December 8, 2016).
6 Mandl KD, Kohane IS, McFadden D, Weber GM, Natter M, Mandel J. et al. Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS): architecture. J Am Med Inform Assoc 2014; Jul-Aug; 21 (04) 615-20.
7 Safran C, Porter D, Lightfoot J, Rury CD, Underhill LH, Bleich HL, Slack WV. ClinQuery: A System for Online Searching of Data in a Teaching Hospital. Ann Intern Med 1989; 111: 751-6.
8 Lin KJ, Schneeweiss S. Considerations for the Analysis of Longitudinal Electronic Health Records Linked to Claims Data to Study the Effectiveness and Safety of Drugs. Clin Pharmacol Ther 2016; 100: 147-59.
9 Stadler JG, Donlon K, Siewert JD, Franken T, Lewis NE. Improving the Efficiency and Ease of Healthcare Analysis through Use of Data Visualization Dashboards. Big Data 2016; 04 (02) 129-35.
10 Ananthakrishnan AN, Cagan A, Cai T, Gainer VS, Shaw SY, Savova G. et al. Comparative Effectiveness of Infliximab and Adalimumab in Crohn’s Disease and Ulcerative Colitis. Inflamm Bowel Dis 2016; Apr; 22 (04) 880-5.
11 Kreuzthaler M, Schulz S, Berghold A. Secondary Use of Electronic Health Records for Building Cohort Studies through Top-Down Information Extraction. J Biomed Inform 2015; 53: 188-95.
12 Chen B, Butte AJ. Leveraging Big Data to Transform Target Selection and Drug Discovery. Clin Pharmacol Ther 2016; 99: 285-97.
13 Ananthakrishnan AN, Cagan A, Cai T, Gainer VS, Shaw SY, Churchill S. et al. Statin Use Is Associated with Reduced Risk of Colorectal Cancer in Patients with Inflammatory Bowel Diseases. Clin Gastroenterol Hepatol 2016; Jul; 14 (07) 973-9.
14 Sherman RE, Anderson SA, Dal Pan GJ, Gray GW. et al. Real-World Evidence – What Is It and What Can It Tell Us?. N Engl J Med 2016; 375: 2293-7.
15 Thomas M. Accomplishments and Opportunities in Biosurveillance. J Public Health Manag Pract 2016; 22: S81-2.
16 Freedman JD, Green L, Landon BE. All-Payer Claims Databases — Uses and Expanded Prospects after Gobeille. N Engl J Med 2016; 375: 2215-7.
17 Kruse CS, Goswamy R, Raval YJ, Marawi S. Challenges and Opportunities of Big Data in Health Care: A Systematic Review. JMIR Med Inform 2016; 04: e38.
18 Slack WV, Leviton A, Bennett SE, Fleischmann KH, Lawrence RS. Relationship between Age, Education, and Time to Respond to Questions in a Computer-Based Medical Interview. Comput Biomed Res 1988; 21: 78-84.
19 Wachter RM. The Digital Doctor: Hope, Hype, and Harm at the Dawn of Medicine’s Computer Age. McGraw Hill Professional; 2015
20 Danciu I, Cowan JD, Basford M, Wang X, Wang X, Saip A, Osgood S. et al. Secondary Use of Clinical Data: The Vanderbilt Approach. J Biomed Inform 2014; Dec; 52: 28-35.
21 Murphy SN, Weber G, Mendis M, Gainer V, Chueh HC, Churchill S. et al. Serving the Enterprise and Beyond with Informatics for Integrating Biology and the Bedside (i2b2). J Am Med Inform Assoc 2010; 17: 124-30.
22 Patient-Centered Outcomes Research Institute. PCORnet: The National Patient-Centered Clinical Research Network. Washington, DC: Patient-Centered Outcomes Research Institute; 2015. www.pcori.org/research-results/pcornet-national-patient-centered-clinical-research-network (accessed Dec 8, 2016).
23 EuroRec Institute. www.eurorec.org (accessed Dec 8, 2016).
24 Safran C, Bloomrosen M, Hammond WE, Labkoff S, Markel-Fox S, Tang PC. et al. Toward a National Framework for the Secondary Use of Health Data: An American Medical Informatics Association White Paper. J Am Med Inform Assoc 2007; 14: 1-9.
25 Bloomrosen M, Detmer D. Advancing the Framework: Use of Health Data — A Report of a Working Conference of the American Medical Informatics Association. J Am Med Inform Assoc 2008; 15: 715-22.
26 Geissbuhler A, Safran C, Buchan I, Bellazzi R, Labkoff S, Eilenberg K. et al. Trustworthy Reuse of Health Data: A Transnational Perspective. Int J Med Inform 2013; Jan; 82 (01) 1-9.
27 Hripcsak G, Bloomrosen M, Brennan P, Chute CG, Cimino J, Detmer DE. et al. Health Data Use, Stewardship, and Governance: Ongoing Gaps and Challenges: A Report from AMIA’s 2012 Health Policy Meeting. J Am Med Inform Assoc 2014; Mar-Apr; 21 (02) 204-11.
28 The Facts about MIB. https://www.mib.com/facts_about_mib.html (accessed March 15, 2017).