Literature DB >> 27186282

Privacy and security in the era of digital health: what should translational researchers know and do about it?

Barbara L Filkins1, Ju Young Kim2, Bruce Roberts3, Winston Armstrong4, Mark A Miller4, Michael L Hultner5, Anthony P Castillo6, Jean-Christophe Ducom7, Eric J Topol8, Steven R Steinhubl8.   

Abstract

The rapid growth in the availability and incorporation of digital technologies in almost every aspect of our lives creates extraordinary opportunities but brings with it unique challenges. This is especially true for the translational researcher, whose work has been markedly enhanced through the capabilities of big data aggregation and analytics, wireless sensors, online study enrollment, mobile engagement, and much more. At the same time each of these tools brings distinctive security and privacy issues that most translational researchers are inadequately prepared to deal with despite accepting overall responsibility for them. For the researcher, the solution for addressing these challenges is both simple and complex. Cyber-situational awareness is no longer a luxury-it is fundamental in combating both the elite and highly organized adversaries on the Internet as well as taking proactive steps to avoid a careless turn down the wrong digital dark alley. The researcher, now responsible for elements that may/may not be beyond his or her direct control, needs an additional level of cyber literacy to understand the responsibilities imposed on them as data owner. Responsibility lies with knowing what you can do about the things you can control and those you can't. The objective of this paper is to describe the data privacy and security concerns that translational researchers need to be aware of, and discuss the tools and techniques available to them to help minimize that risk.

Entities:  

Keywords:  Digital health; confidentiality; cyber security; privacy; translational research

Year:  2016        PMID: 27186282      PMCID: PMC4859641     

Source DB:  PubMed          Journal:  Am J Transl Res            Impact factor:   4.060


  9 in total

1.  NIH policy supports broader sharing of genomic data, strengthens informed-consent rules: research participants must give consent for secondary sharing, even if data are de-identified.

Authors: 
Journal:  Am J Med Genet A       Date:  2015-01       Impact factor: 2.802

2.  Identifying personal genomes by surname inference.

Authors:  Melissa Gymrek; Amy L McGuire; David Golan; Eran Halperin; Yaniv Erlich
Journal:  Science       Date:  2013-01-18       Impact factor: 47.728

3.  The International Cancer Genome Consortium's evolving data-protection policies.

Authors:  Djims Milius; Edward S Dove; Donald Chalmers; Stephanie O M Dyke; Kazuto Kato; Pilar Nicolás; B F Francis Ouellette; Brad Ozenberger; Laura L Rodriguez; Nikolajs Zeps; Yann Joly
Journal:  Nat Biotechnol       Date:  2014-06       Impact factor: 54.908

4.  Family physicians and electronic communication.

Authors:  Roger Ladouceur
Journal:  Can Fam Physician       Date:  2014-04       Impact factor: 3.275

5.  Standard requirements for GCP-compliant data management in multinational clinical trials.

Authors:  Christian Ohmann; Wolfgang Kuchinke; Steve Canham; Jens Lauritsen; Nader Salas; Carmen Schade-Brittinger; Michael Wittenberg; Gladys McPherson; John McCourt; Francois Gueyffier; Andrea Lorimer; Ferràn Torres
Journal:  Trials       Date:  2011-03-22       Impact factor: 2.279

6.  A systematic review of re-identification attacks on health data.

Authors:  Khaled El Emam; Elizabeth Jonker; Luk Arbuckle; Bradley Malin
Journal:  PLoS One       Date:  2011-12-02       Impact factor: 3.240

7.  Exploring the Far Side of Mobile Health: Information Security and Privacy of Mobile Health Apps on iOS and Android.

Authors:  Tobias Dehling; Fangjian Gao; Stephan Schneider; Ali Sunyaev
Journal:  JMIR Mhealth Uhealth       Date:  2015-01-19       Impact factor: 4.773

8.  Choosing blindly but wisely: differentially private solicitation of DNA datasets for disease marker discovery.

Authors:  Yongan Zhao; Xiaofeng Wang; Xiaoqian Jiang; Lucila Ohno-Machado; Haixu Tang
Journal:  J Am Med Inform Assoc       Date:  2014-10-28       Impact factor: 4.497

Review 9.  Genomic biomarkers for personalized medicine: development and validation in clinical studies.

Authors:  Shigeyuki Matsui
Journal:  Comput Math Methods Med       Date:  2013-04-17       Impact factor: 2.238

  9 in total
  22 in total

1.  Generating Electronic Health Records with Multiple Data Types and Constraints.

Authors:  Chao Yan; Ziqi Zhang; Steve Nyemba; Bradley A Malin
Journal:  AMIA Annu Symp Proc       Date:  2021-01-25

2.  Evaluation of Healthcare Interventions and Big Data: Review of Associated Data Issues.

Authors:  Carl V Asche; Brian Seal; Kristijan H Kahler; Elisabeth M Oehrlein; Meredith Greer Baumgartner
Journal:  Pharmacoeconomics       Date:  2017-08       Impact factor: 4.981

3.  Using Fitness Trackers in Clinical Research: What Nurse Practitioners Need to Know.

Authors:  Lisa Cadmus-Bertram
Journal:  J Nurse Pract       Date:  2017-01       Impact factor: 0.767

4.  SynTEG: a framework for temporal structured electronic health data simulation.

Authors:  Ziqi Zhang; Chao Yan; Thomas A Lasko; Jimeng Sun; Bradley A Malin
Journal:  J Am Med Inform Assoc       Date:  2021-03-01       Impact factor: 4.497

Review 5.  Wearables in Cardiovascular Disease.

Authors:  Sanchit Kumar; Angela M Victoria-Castro; Hannah Melchinger; Kyle D O'Connor; Mitchell Psotka; Nihar R Desai; Tariq Ahmad; F Perry Wilson
Journal:  J Cardiovasc Transl Res       Date:  2022-09-09       Impact factor: 3.216

Review 6.  Analysis of mHealth research: mapping the relationship between mobile apps technology and healthcare during COVID-19 outbreak.

Authors:  Dina M El-Sherif; Mohamed Abouzid
Journal:  Global Health       Date:  2022-06-28       Impact factor: 10.401

7.  Consent for mobile phone surveys of non-communicable disease risk factors in low-resource settings: an exploratory qualitative study in Uganda.

Authors:  Erisa Mwaka; Janet Nakigudde; Joseph Ali; Joseph Ochieng; Kristina Hallez; Raymond Tweheyo; Alain Labrique; Dustin G Gibson; Elizeus Rutebemberwa; George Pariyo
Journal:  Mhealth       Date:  2019-08-19

8.  Digital health for assessment and intervention targeting tobacco and cannabis co-use.

Authors:  Nhung Nguyen; Charlie Nguyen; Johannes Thrul
Journal:  Curr Addict Rep       Date:  2020-06-19

Review 9.  Barriers and facilitators of the uptake of digital health technology in cardiovascular care: a systematic scoping review.

Authors:  Sera Whitelaw; Danielle M Pellegrini; Mamas A Mamas; Martin Cowie; Harriette G C Van Spall
Journal:  Eur Heart J Digit Health       Date:  2021-02-04

10.  Preserving professional identities, behaviors, and values in digital professionalism using social networking sites; a systematic review.

Authors:  Shaista Salman Guraya; Salman Yousuf Guraya; Muhamad Saiful Bahri Yusoff
Journal:  BMC Med Educ       Date:  2021-07-12       Impact factor: 2.463

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