TY - JOUR AU - Califf, R. M. AU - Robb, M. A. AU - Bindman, A. B. AU - Briggs, J. P. AU - Collins, F. S. AU - Conway, P. H. PY - 2016 DA - 2016// TI - Transforming evidence generation to support health and health care decisions JO - N Engl J Med VL - 375 UR - https://doi.org/10.1056/NEJMsb1610128 DO - 10.1056/NEJMsb1610128 ID - Califf2016 ER - TY - JOUR AU - Gelinas, L. AU - Wertheimer, A. AU - Miller, F. G. PY - 2016 DA - 2016// TI - When and why is research without consent permissible? JO - Hastings Cent Rep VL - 46 UR - https://doi.org/10.1002/hast.548 DO - 10.1002/hast.548 ID - Gelinas2016 ER - TY - BOOK PY - 2012 DA - 2012// TI - Best care at lower cost: the path to continuously learning health care in America PB - The National Academies Press CY - Washington, DC ID - ref3 ER - TY - JOUR AU - Juengst, E. T. T. M. I. PY - 2014 DA - 2014// TI - Ethical challenges in managing and using large patient data sets JO - N C Med J VL - 75 ID - Juengst2014 ER - TY - JOUR AU - Kaplan, B. PY - 2016 DA - 2016// TI - How should health data be used? Privacy, secondary use, and big data sales JO - Camb Q Healthc Ethics VL - 25 UR - https://doi.org/10.1017/S0963180115000614 DO - 10.1017/S0963180115000614 ID - Kaplan2016 ER - TY - STD TI - Gliklich R, Dreyer N, Leavy M. (eds). Executive Summary. In: Registries for Evaluating Patient Outcomes: A User’s Guide, 3rd ed. (pp. 1–9). Agency for Healthcare Research and Quality, AHRQ Publication No. 13(14)-EHC111. Rockville, MD; 2014. http://www.effectivehealthcare.ahrq.gov/registries-guide-3.cfm. Accessed 1 Jun 2016. UR - http://www.effectivehealthcare.ahrq.gov/registries-guide-3.cfm ID - ref6 ER - TY - STD TI - Federal Constitution of the Swiss Confederation of 18 April 1999 (status as of 3 march 2013), RS 101. “Art. 13 right to privacy 1. Every person has the right to privacy in their private and family life and in their home, and in relation to their mail and telecommunications.2 every person has the right to be protected against the misuse of their personal data.” ID - ref7 ER - TY - STD TI - Federal Act on Data Protection (DPA) of 19 June 1992 (status as of 1 January 2011), RS 235.1. ID - ref8 ER - TY - JOUR AU - Larsson, S. AU - Lawyer, P. AU - Garellick, G. AU - Lindahl, B. AU - Lundström, M. PY - 2012 DA - 2012// TI - Use of 13 disease registries in 5 countries demonstrates the potential to use outcome data to improve health care's value JO - Health Aff VL - 31 UR - https://doi.org/10.1377/hlthaff.2011.0762 DO - 10.1377/hlthaff.2011.0762 ID - Larsson2012 ER - TY - STD TI - Federal Office of Public Health (FOPH), the Federal Council’s health-policy priorities, Health2020 report. 2013. https://www.bag.admin.ch/bag/en/home/themen/strategien-politik/gesundheit-2020/eine-umfassende-strategie-fuer-das-gesundheitswesen.html. Accessed 3 Mar 2018. UR - https://www.bag.admin.ch/bag/en/home/themen/strategien-politik/gesundheit-2020/eine-umfassende-strategie-fuer-das-gesundheitswesen.html ID - ref10 ER - TY - BOOK AU - Creswell, J. W. PY - 2013 DA - 2013// TI - Qualitative inquiry and research design. Choosing among five approaches. 3rd ed PB - Sage Publications Ltd CY - London ID - Creswell2013 ER - TY - STD TI - Swiss Medical Association (FMH). Plateforme suisse des registres médicaux. https://www.fmh.ch/fr/asqm/_service/plateforme_suisse_des_registre.cfm. Accessed 3 Mar 2018. UR - https://www.fmh.ch/fr/asqm/_service/plateforme_suisse_des_registre.cfm ID - ref12 ER - TY - CHAP AU - Spencer, L. AU - Ritchie, J. AU - Ormston, R. AU - O'Connor, W. AU - Barnard, M. ED - Ritchie, J. ED - Lewis, J. ED - McNaughton Nicholls, C. ED - Ormston, R. PY - 2014 DA - 2014// TI - Analysis: principles and processes BT - Qualitative research practice. A guide for social science students and researchers PB - Sage Publications Ltd CY - London ID - Spencer2014 ER - TY - JOUR AU - Ziebland, S. AU - McPherson, A. PY - 2006 DA - 2006// TI - Making sense of qualitative data analysis: an introduction with illustrations from DIPEx (personal experiences of health and illness) JO - Med Educ VL - 40 UR - https://doi.org/10.1111/j.1365-2929.2006.02467.x DO - 10.1111/j.1365-2929.2006.02467.x ID - Ziebland2006 ER - TY - STD TI - Loi fédérale sur l’enregistrement des maladies oncologiques (LEMO) du 18 mars 2016. RS 118.33. ID - ref15 ER - TY - JOUR AU - Salathé, M. AU - Driessen, S. PY - 2016 DA - 2016// TI - Consentement général: un modèle uniforme pour faciliter la recherche sur tout le territoire suisse JO - SAMW/ASSM Bulletin VL - 3 ID - Salathé2016 ER - TY - STD TI - SPHN (Swiss Personalized Health Network) project, 2016: https://www.sib.swiss/services-infrastructure/personalized-health/swiss-personalized-health-network. Accessed 3 Mar 2018. UR - https://www.sib.swiss/services-infrastructure/personalized-health/swiss-personalized-health-network ID - ref17 ER - TY - STD TI - Ruiz R A. Biobanken. Ein gesetzlicher Rahmen zur Sicherung der biomedizinischen Forschung und des Patientenschutzes. Submitted date 16.03.2017.https://www.parlament.ch/de/ratsbetrieb/suche-curia-vista/geschaeft?AffairId=20173170. Accessed 9 Jul 2017. UR - https://www.parlament.ch/de/ratsbetrieb/suche-curia-vista/geschaeft?AffairId=20173170 ID - ref18 ER - TY - JOUR AU - Baskaran, V. AU - Davis, K. AU - Bali, R. K. AU - Naguib, R. N. AU - Wickramasinghe, N. PY - 2013 DA - 2013// TI - Managing information and knowledge within maternity services: privacy and consent issues JO - Inform Health Soc Care VL - 38 UR - https://doi.org/10.3109/17538157.2012.735732 DO - 10.3109/17538157.2012.735732 ID - Baskaran2013 ER - TY - JOUR AU - Stevenson, F. AU - Lloyd, N. AU - Harrington, L. AU - Wallace, P. PY - 2013 DA - 2013// TI - Use of electronic patient records for research: views of patients and staff in general practice JO - Fam Pract VL - 30 UR - https://doi.org/10.1093/fampra/cms069 DO - 10.1093/fampra/cms069 ID - Stevenson2013 ER - TY - JOUR AU - Baird, W. AU - Jackson, R. AU - Ford, H. AU - Evangelou, N. AU - Busby, M. AU - Bull, P. PY - 2009 DA - 2009// TI - Holding personal information in a disease-specific register: the perspectives of people with multiple sclerosis and professionals on consent and access JO - J Med Ethics VL - 35 UR - https://doi.org/10.1136/jme.2008.025304 DO - 10.1136/jme.2008.025304 ID - Baird2009 ER - TY - JOUR AU - Korngut, L. AU - MacKean, G. AU - Casselman, L. AU - Johnston, M. AU - Day, L. AU - Lam, D. PY - 2013 DA - 2013// TI - Perspectives on neurological patient registries: a literature review and focus group study JO - BMC Med Res Methodol VL - 13 UR - https://doi.org/10.1186/1471-2288-13-135 DO - 10.1186/1471-2288-13-135 ID - Korngut2013 ER - TY - JOUR AU - Caine, K. AU - Hanania, R. PY - 2013 DA - 2013// TI - Patients want granular privacy control over health information in electronic medical records JO - J Am Med Inform Assoc VL - 20 UR - https://doi.org/10.1136/amiajnl-2012-001023 DO - 10.1136/amiajnl-2012-001023 ID - Caine2013 ER - TY - JOUR AU - Maiorana, A. AU - Steward, W. T. AU - Koester, K. A. AU - Pearson, C. AU - Shade, S. B. AU - Chakravarty, D. PY - 2012 DA - 2012// TI - Trust, confidentiality, and the acceptability of sharing HIV-related patient data: lessons learned from a mixed methods study about health information exchanges JO - Implement Sci VL - 7 UR - https://doi.org/10.1186/1748-5908-7-34 DO - 10.1186/1748-5908-7-34 ID - Maiorana2012 ER - TY - JOUR AU - Wright, A. AU - Maloney, F. L. AU - Feblowitz, J. C. PY - 2011 DA - 2011// TI - Clinician attitudes toward and use of electronic problem lists: a thematic analysis JO - BMC Med Inform Decis Mak VL - 11 UR - https://doi.org/10.1186/1472-6947-11-36 DO - 10.1186/1472-6947-11-36 ID - Wright2011 ER - TY - JOUR AU - Walker, J. AU - Ahern, D. K. AU - Le, L. X. AU - Delbanco, T. PY - 2009 DA - 2009// TI - Insights for internists: "I want the computer to know who I am" JO - J Gen Intern Med VL - 24 UR - https://doi.org/10.1007/s11606-009-0973-1 DO - 10.1007/s11606-009-0973-1 ID - Walker2009 ER - TY - JOUR AU - Jenkings, K. N. AU - Wilson, R. G. PY - 2007 DA - 2007// TI - The challenge of electronic health records (EHRs) design and implementation: responses of health workers to drawing a 'big and rich picture' of a future EHR programme using animated tools JO - Inform Prim Care VL - 15 ID - Jenkings2007 ER - TY - JOUR AU - Barrett, G. AU - Cassell, J. A. AU - Peacock, J. L. AU - Coleman, M. P. AU - National Cancer, R. PY - 2006 DA - 2006// TI - National survey of British public's views on use of identifiable medical data by the National Cancer Registry JO - BMJ VL - 332 UR - https://doi.org/10.1136/bmj.38805.473738.7C DO - 10.1136/bmj.38805.473738.7C ID - Barrett2006 ER - TY - JOUR AU - Robling, M. R. AU - Hood, K. AU - Houston, H. AU - Pill, R. AU - Fay, J. AU - Evans, H. M. PY - 2004 DA - 2004// TI - Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study JO - J Med Ethics VL - 30 UR - https://doi.org/10.1136/jme.2003.005157 DO - 10.1136/jme.2003.005157 ID - Robling2004 ER - TY - STD TI - Governance structure. In: Operating principles and technical standards for Australian clinical quality registries. Australian Commission on Safety and Quality in Health Care; 2008. http://www.med.monash.edu.au/sphpm/creps/docs/operating-principals-and-technical-standards-nov-2008.pdf. Accessed 20 Jan 2017. UR - http://www.med.monash.edu.au/sphpm/creps/docs/operating-principals-and-technical-standards-nov-2008.pdf ID - ref30 ER - TY - STD TI - The Precision Medicine Initiative Cohort Program Building a Research Foundation for 21st Century Medicine. https://www.nih.gov/sites/default/files/research-training/initiatives/pmi/pmi-working-group-report-20150917-2.pdf. Accessed 28 Nov 2016. UR - https://www.nih.gov/sites/default/files/research-training/initiatives/pmi/pmi-working-group-report-20150917-2.pdf ID - ref31 ER - TY - JOUR AU - Baker, D. B. AU - Kaye, J. AU - Terry, S. F. PY - 2016 DA - 2016// TI - Governance through privacy, fairness, and respect for individuals JO - EGEMS (Wash DC) VL - 4 ID - Baker2016 ER - TY - STD TI - WMA, World Medical Association. Declaration of Taipei on Ethical Considerations regarding Health Databases and Biobanks. 2016. http://www.wma.net/en/30publications/10policies/d1/. Accessed 20 Jan 2017. UR - http://www.wma.net/en/30publications/10policies/d1/ ID - ref33 ER - TY - JOUR AU - Callier, S. L. AU - Abudu, R. AU - Mehlman, M. J. AU - Singer, M. E. AU - Neuhauser, D. AU - Caga-Anan, C. PY - 2016 DA - 2016// TI - Ethical, legal, and social implications of personalized genomic medicine research: current literature and suggestions for the future JO - Bioethics VL - 30 UR - https://doi.org/10.1111/bioe.12285 DO - 10.1111/bioe.12285 ID - Callier2016 ER - TY - STD TI - Nuffield Council on Bioethics. Biological and health data: The collection, linking and use of data in biomedical research and health care: ethical issues. 2015. http://nuffieldbioethics.org/report/collection-linking-use-data-biomedical-research-health-care/chapter-downloads-2/. Accessed 17 Aug 2016. UR - http://nuffieldbioethics.org/report/collection-linking-use-data-biomedical-research-health-care/chapter-downloads-2/ ID - ref35 ER - TY - JOUR AU - Hellman, S. PY - 2014 DA - 2014// TI - Learning while caring: Medicine's epistemology JO - J Clin Oncol VL - 32 UR - https://doi.org/10.1200/JCO.2014.56.0466 DO - 10.1200/JCO.2014.56.0466 ID - Hellman2014 ER - TY - CHAP AU - Big Biobanks, B. R. ED - DSaM, M. PY - 2016 DA - 2016// TI - Three major governance challenges and some mini-constitutional solutions BT - Ethics and governance of biomedical research—theory and practice. Volume 4 ed. RESEARCH ETHICS FORUM. Switzerland: springer ID - Big Biobanks2016 ER - TY - JOUR AU - Arnason, V. PY - 2011 DA - 2011// TI - Database research: public and private interests JO - Camb Q Healthc Ethics VL - 20 UR - https://doi.org/10.1017/S0963180111000302 DO - 10.1017/S0963180111000302 ID - Arnason2011 ER - TY - JOUR AU - Budin-Ljøsne, I. AU - Patient, H. J. R. PY - 2016 DA - 2016// TI - Interest organizations’ views on personalized medicine: a qualitative study JO - BMC Medical Ethics VL - 17 UR - https://doi.org/10.1186/s12910-016-0111-7 DO - 10.1186/s12910-016-0111-7 ID - Budin-Ljøsne2016 ER -