Health data cooperatives - Citizen empowerment

Methods of Information in Medicine

Volumn 53, Issue 2, 2014, Pages 82-86

  Hafen, Ernst ^a   Kossmann, D ^a   Brand, A ^b  

^a ETH ZURICH   (Switzerland)

^b MAASTRICHT UNIVERSITY   (Netherlands)

Author keywords

Citizen centric; Cooperative; Democracy; Empowerment; Health data; Ownership

Indexed keywords

ACCESS TO INFORMATION; BEHAVIOR; COMPUTER PROGRAM; COMPUTER SYSTEM; CONFIDENTIALITY; DATA BASE; ELECTRONIC MEDICAL RECORD; HEALTH CARE PLANNING; HUMAN; MEDICAL INFORMATION SYSTEM; MEDICAL RECORD; NONBIOLOGICAL MODEL; ORGANIZATION AND MANAGEMENT; UNITED STATES;

ACCESS TO INFORMATION; ARIZONA; COMPUTER SYSTEMS; CONFIDENTIALITY; DATABASES AS TOPIC; ELECTRONIC HEALTH RECORDS; HEALTH INFORMATION EXCHANGE; HEALTH PLAN IMPLEMENTATION; HUMANS; MEDICAL RECORD LINKAGE; MODELS, ORGANIZATIONAL; OWNERSHIP; POWER (PSYCHOLOGY); SOFTWARE;

EID: 84897951222     PISSN: 00261270     EISSN: None     Source Type: Journal    
DOI: 10.3414/ME13-02-0051     Document Type: Article

References (20)

1. Yong PL, Saunders, RS, Olsen LA. The Healthcare Imperative: Lowering Costs and Improving Outcomes: Workshop Series Summary. IOM (Institute of Medicine). Washington, DC: The National Academies Press; 2010.
2. Scott SA, Sangkuhl K, Stein CM, Hulot JS, Mega JL, Roden DM, et al. Clinical pharmacogenetics implementation consortium guidelines for CYP2C19 genotype and clopidogrel therapy: 2013 update. Clin Pharmacol Ther 2013; 94 (3): 317-323.
3. Harper AR, Topol EJ. Pharmacogenomics in clinical practice and drug development. Nat Biotechnol 2012; 30 (11): 1117-1124.
4. Frueh FW. On rat poison and human medicines: personalizing warfarin therapy. Trends Mol Med 2012; 18 (4): 201-205.
5. Kosten des Gesundheitswesens nach Leistungen [database on the Internet]. Neuchatel, Bundesamt für Statistik 2013 cited 2013 Nov 03]. Avail - able from: http://www.bfs.admin.ch/bfs/portal/de/ index/themen/14/05/blank/key/ leistungserbringer.html.
6. Wetterstrand KA. DNA Sequencing Costs: Data from the NHGRI Genome Sequencing Program (GSP). 2013. Available from: http://www.genome. gov/sequencingcosts.
7. Harvey A, Brand A, Holgate ST, Kristiansen LV, Lehrach H, Palotie A, et al. The future of technologies for personalised medicine. N Biotechnol 2012; 29 (6): 625-633.
8. Horgan D, editor. Innovation and Patient Access to Personalised Medicine. EAPM Report from Irish Presidency Conference March 20/21, 2013. Available from http://euapm.eu/wp-content/uploads/ 2012/07/EAPM-REPORT-on-Innovation-and- Patient-Access-to-Personalised-Medicine.pdf
9. Pelletier SG. Explosive Growth in Health Care Apps Raises Oversight Questions. Association of American Medical Colleges; 2012. Available from https://www.aamc.org/newsroom/reporter/ october2012/308516/health-care-apps.html
10. Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease. The National Academies Press; 2011. Available from http://www.nap.edu/ openbook.php?record_id=13284
11. Hood L. Systems biology and p4 medicine: past, present, and future. Rambam Maimonides Med J 2013; 4 (2): e0012.
12. Brand A. Public Health Genomics and personalized healthcare: a pipeline from cell to society. Drug Metabol Drug Interact [Editorial] 2012; 27 (3): 121-123.
13. EC Press Release: Better use of health data will transform the healthcare landscape, says expert report [database on the Internet] 2012 [Cited 2013 Nov 03]. Available from: http://europa.eu/rapid/ press-release_IP-12-453_en.htm.
14. Sorensen K, Brand H. Health literacy: the essential catalyst for the responsible and effective translation of genome-based information for the benefit of population health. Public Health Genomics 2011; 14 (4-5): 195-200.
15. Personal Data: The Emergence of a New Asset Class. World Economic Forum; 2011. Available from http://www.weforum.org/reports/personaldata- emergence-new-asset-class
16. Rose J, Rehse O, Röber B. The Value of Our Digital Identity. Boston Consulting Group; 2012. Available from https://www.bcgperspectives.com/ content/articles/digital_economy_consumer_ insight_value_of_our_digital_identity/
17. Arasu A, Blanas S, Eguro K, Joglekar M, Kaushik R, Kossmann D, et al. Secure database-as-a-service with Cipherbase. Proceedings of the 2013 ACM SIGMOD International Conference on Management of Data; New York, New York, USA. ACM 2013. pp 1033-1036.
18. Sanamrad T, Braun L, Marfurt A, Kossmann D, Venkatesan R. POP: A New Encryption Scheme for Dynamic Databases. Technical Report Nr. 782, Systems Group, Department of Computer Science, ETH Zürich, Zürich. 2013. Available from ftp://ftp.inf.ethz.ch/pub/publications/techreports/7xx/782.pdf
19. Bamford R, Borkar VR, Brantner M, Fischer PM, Florescu D, Graf DA, et al. XQuery Reloaded. PVLDB 2009; 2 (2): 1342-1353.
20. Topol EJ. The creative destruction of medicine. New York: Basic Books; 2012.