Big health data: the need to earn public trust

Failures in implementation of data sharing projects have eroded public trust. In the wake of NHS England’s decision to close down its care.data programme, Tjeerd-Pieter van Staa and colleagues examine how we can do better

[1]  E. Gale,et al.  The influence of glucose-lowering therapies on cancer risk in type 2 diabetes , 2009, Diabetologia.

[2]  Ross J. Anderson,et al.  The collection, linking and use of data in biomedical research and health care: ethical issues , 2015 .

[3]  Iain E. Buchan,et al.  e-Labs and Work Objects: Towards Digital Health Economies , 2009, EuropeComm.

[4]  Spiros Denaxas,et al.  Enhancing Discoverability of Public Health and Epidemiology Research Data , 2014 .

[5]  Pam Carter,et al.  The social licence for research: why care.data ran into trouble , 2015, Journal of Medical Ethics.

[6]  David Lund,et al.  Dynamic Consent: A Possible Solution to Improve Patient Confidence and Trust in How Electronic Patient Records Are Used in Medical Research , 2015, JMIR medical informatics.

[7]  Rolf Wüstenhagen,et al.  Social acceptance of renewable energy innovation: An introduction to the concept , 2007 .

[8]  Iain Buchan,et al.  The Study Team for Early Life Asthma Research (STELAR) consortium ‘Asthma e-lab’: team science bringing data, methods and investigators together , 2015, Thorax.

[9]  J. Doe,et al.  Strengthening the reliability and credibility of observational epidemiology studies by creating an Observational Studies Register. , 2011, Journal of clinical epidemiology.

[10]  Stephen Kaptoge,et al.  Statistical methods for the time-to-event analysis of individual participant data from multiple epidemiological studies , 2010, International journal of epidemiology.

[11]  Richard Platt,et al.  The U.S. Food and Drug Administration's Mini‐Sentinel program: status and direction , 2012, Pharmacoepidemiology and drug safety.

[12]  M. L. Bruin,et al.  Glucose-lowering agents and the patterns of risk for cancer: a study with the General Practice Research Database and secondary care data , 2012, Diabetologia.

[13]  I Buchan,et al.  Combining Health Data Uses to Ignite Health System Learning , 2015, Methods of Information in Medicine.

[14]  A. Levy,et al.  CNODES: the Canadian Network for Observational Drug Effect Studies , 2012, Open medicine : a peer-reviewed, independent, open-access journal.

[15]  J. Ioannidis.  Why Most Published Research Findings Are False , 2005, PLoS medicine.

[16]  G. Daker-White,et al.  The care.data consensus? A qualitative analysis of opinions expressed on Twitter , 2015, BMC Public Health.

[17]  Erika Check Hayden,et al.  Rule rewrite aims to clean up scientific software , 2015, Nature.

[18]  Brian Sauer,et al.  Guidelines for good database selection and use in pharmacoepidemiology research , 2012, Pharmacoepidemiology and drug safety.

[19]  Richard M Martin,et al.  “Let’s get the best quality research we can”: public awareness and acceptance of consent to use existing data in health research: a systematic review and qualitative study , 2013, BMC Medical Research Methodology.

[20]  T. MacDonald,et al.  Managing security and privacy concerns over data storage in healthcare research , 2011, Pharmacoepidemiology and drug safety.

[21]  Stephen P. Boyd,et al.  Distributed Optimization and Statistical Learning via the Alternating Direction Method of Multipliers , 2011, Found. Trends Mach. Learn..

[22]  Simon Thompson,et al.  A case study of the Secure Anonymous Information Linkage (SAIL) Gateway: A privacy-protecting remote access system for health-related research and evaluation☆ , 2014, J. Biomed. Informatics.

[23]  H. Sørensen,et al.  The Nordic countries as a cohort for pharmacoepidemiological research. , 2010, Basic & clinical pharmacology & toxicology.

[24]  William W. Stead,et al.  Toward a science of learning systems: a research agenda for the high-functioning Learning Health System , 2014, J. Am. Medical Informatics Assoc..