Data protection regulation and the promotion of health research: Getting the balance right

QJM: An International Journal of Medicine

Volumn 107, Issue 1, 2014, Pages 3-5

  Fears, R ^a   Brand, H ^b   Frackowiak, R ^c   Pastoret, P P ^a   Souhami, R ^d   Thompson, B ^e  

^a FEAM   (Belgium)

^b European Alliance for Personalised Medicine   (Belgium)

^c Science and Technology Committee NATO Parliamentary Assembly   (Belgium)

^d Academy of Medical Sciences   (United Kingdom)

^e WELLCOME TRUST SANGER INSTITUTE   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

COMPUTER SECURITY; DISEASE REGISTRY; EDITORIAL; EUROPEAN UNION; HEALTH CARE; HEALTH CARE POLICY; HEALTH PROMOTION; HUMAN; MEDICAL INFORMATICS; MEDICAL RECORD; MEDICAL RESEARCH; PATIENT CODING; PRIORITY JOURNAL; PROFESSIONAL STANDARD; PUBLIC HEALTH; SCIENTIST; ARTICLE; CONFIDENTIALITY; EUROPE; LEGAL ASPECT; STANDARD;

BIOMEDICAL RESEARCH; COMPUTER SECURITY; CONFIDENTIALITY; EUROPE; EUROPEAN UNION; FORMS AND RECORDS CONTROL; HEALTH RECORDS, PERSONAL; HUMANS; MEDICAL RECORDS;

EID: 84902490644     PISSN: 14602725     EISSN: 14602393     Source Type: Journal    
DOI: 10.1093/qjmed/hct236     Document Type: Editorial

References (13)

1. Vallance P, Chalmers I. Secure use of individual patient data from clinical trials. Lancet 2013; 382:1073-4.
2. Di Zorrio CT, Carinci F. Cross-border flow of health information: is "privacy by design" sufficient to obtain complete and accurate data for public health in Europe? The case of BIRO/EUBIROD diabetes registers. Eur J Public Health 2010; 20(Suppl. 1):101-2.
3. Stenbeck M, Allebeck P. Do the planned changes to European data protection threaten or facilitate important health research? Eur J Public Health 2011; 21:682-3.
4. Ploem MC, Essink-Bot ML, Stronks K. Proposed EU data regulation is a threat to medical research. Br Med J 2013; 346:f3534.
5. Anonymous. Privacy in the digital age. Nature 2013; 497:287.
6. FEAM. Data Protection Regulation. A FEAM Statement. June 2012. http://www.feam-site.eu/cms/docs/publications/FEAM DataProtectionStatementJune2012.pdf (16 October 2013, date last accessed).
7. FEAM, Wellcome Trust. Realising the Societal Benefits of Health Research through the Data Protection Regulation (2012/0011 (COD)). February 2013. http://www.feam-site. eu/cms/docs/publications/DPR/FEAMWTMEPbriefingonDP Ramendments_amdts.pdf (16 October, date last accessed).
8. Science Europe. Position Statement on the Proposed European General Data Protection Regulation. May 2013. http://www. scienceeurope.org/uploads/Public%20documents%20and%20speeches/SE_DPR_Position_FIN.pdf (31 October, date last accessed).
9. Science Europe Medical Sciences Committee. Opinion Paper on the Benefits of Personal Data Processing for Medical Sciences in the Context of Protection of Patient Privacy and Safety. May 2013. http://www.scienceeurope.org/uploads/Public%20documents%20and%20speeches/ScienceEurope MedicalPaper.pdf (31 October, date last accessed).
10. Vittozzi L, Gainotti S, Mollo E, Petrini C, Taruscio D. Rapid Response to Proposed EU Data Regulation Is a Threat to Medical Research http://www.bmj.com/content/346/bmj. f3534/rr/649040 (15 October, date last accessed).
11. Science Europe, European Alliance for Personalised Medicine, Wellcome Trust, FEAM. Briefing-Data Protection Regulation: Keeping Health Research Alive in the EU. September 2013. http://www.feam-site.eu/cms/docs/activities/DPR/JointWorkshopDPR_17September2013_ ExecutiveSummaryAndAnnexes.pdf (16 October, date last accessed).
12. Science Europe, European Alliance for Personalised Medicine, Wellcome Trust, FEAM. Report of a Roundtable Event-Data Protection Regulation: Keeping Research Alive in the EU. October 2013. http://www.feam-site.eu/cms/docs/activities/DPR/JointWorkshopDPR_17September2013_ Report.pdf (14 November, date last accessed).
13. Fears R, Blum HE, Kelleher D, Meunier F, Souhami R. Reforming the environment for clinical trials: what are the challenges? Q J Med 2013; 106:787-9.