Download PDF
CC BY-NC-ND 4.0 · Yearb Med Inform 2018; 27(01): 010-015
DOI: 10.1055/s-0038-1641193
Keynote
Georg Thieme Verlag KG Stuttgart

Through Patients' Eyes: Regulation, Technology, Privacy, and the Future

Carolyn Petersen
1   Mayo Clinic, Rochester, Minnesota, United States
› Author Affiliations
Further Information

Publication History

Publication Date:
22 April 2018 (online)

Also available at
   Permissions and Reprints

Summary

Privacy is commonly regarded as a regulatory requirement achieved via technical and organizational management practices. Those working in the field of informatics often play a role in privacy preservation as a result of their expertise in information technology, workflow analysis, implementation science, or related skills. Viewing privacy from the perspective of patients whose protected health information is at risk broadens the considerations to include the perceived duality of privacy; the existence of privacy within a context unique to each patient; the competing needs inherent within privacy management; the need for particular consideration when data are shared; and the need for patients to control health information in a global setting. With precision medicine, artificial intelligence, and other treatment innovations on the horizon, health care professionals need to think more broadly about how to preserve privacy in a health care environment driven by data sharing. Patient-reported privacy preferences, privacy portability, and greater transparency around privacy-preserving functionalities are potential strategies for ensuring that privacy regulations are met and privacy is preserved.

Keywords

Patient data privacy - self-disclosure - patient-centered care - eHealth - information dissemination
 

  • References

  • 1 Anthony DL, Stablein T. Privacy in practice: professional discourse about information control in health care. J Health Organ Manag 2016; 30 (02) 207-26
    CrossrefPubMedGoogle Scholar
  • 2 Mackenzie IS, Manray BJ, McDonnell PG, Wei L, MacDonald TM. Managing security and privacy concerns over data storage in healthcare research. Pharmacoepidemiol Drug Saf 2011; 20 (08) 885-93
    CrossrefPubMedGoogle Scholar
  • 3 Lee LM. Ethics and subsequent use of electronic health record data. J Biomed Inform 2017; 71: 143-6
    CrossrefPubMedGoogle Scholar
  • 4 Caine K, Hanania R. Patients want granular privacy control over health information in electronic medical records. J Am Med Inform Assoc 2013; 20 (01) 7-15
    CrossrefPubMedGoogle Scholar
  • 5 Cochran GL, Lander L, Morien M, Lomelin DE, Brittin J, Reker C. , et al. Consumer opinions of health information exchange, e-prescribing, and personal health records. Perspect Health Inf Manag 2015; 12: 1e
    PubMedGoogle Scholar
  • 6 Dimitropoulos L, Patel V, Scheffler SA, Posnack S. Public attitudes toward health information exchange: perceived benefits and concerns. Am J Manag Care 2011; 17 (12 Spec No.): SP111-6
    PubMedGoogle Scholar
  • 7 Genetic discrimination lawsuit raises broader concerns about testing, privacy: Case involves middle school student impacted by results of genetic screening test as newborn. Am J Med Genet A 2016; 170A (05) 1111-2
    PubMedGoogle Scholar
  • 8 Gilman ME. The class differential in privacy law. Brooklyn Law Rev 2012; 77 (04) 389-1445
    PubMedGoogle Scholar
  • 9 Pasquale F. Redescribing health privacy: the importance of information policy. Houston J Health Law Policy 2014; 14: 95-128
    PubMedGoogle Scholar
  • 10 Deverka PA, Majumder MA, Villanueva AG, Anderson M, Bakker AC, Bardill J. , et al. Creating a data resource: what will it take to build a medical information commons?. Genome Med 2017; 9 (01) 84
    CrossrefPubMedGoogle Scholar
  • 11 Lee C. Veterans angered by file scandal. Washington Post. 24 May 2006. Available at: www.washingtonpost.com/wp-dyn/content/article/2006/05/23/AR2006052301603.html (Accessed 12/2/2017).
    PubMedGoogle Scholar
  • 12 Brothers KB, East KM, Kelley WV, Wright ME, Westbrook MJ, Rich CA. , et al. Eliciting preferences on secondary findings: the Preferences Instrument for Genomic Secondary Results. Genet Med 2017; 19 (03) 337-44
    PubMedGoogle Scholar
  • 13 Kulynych J, Greely HT. Clinical genomics, big data, and electronic medical records: reconciling patient rights with research when privacy and science collide. J Law Biosci 2017; 4 (01) 94-132
    PubMedGoogle Scholar
  • 14 O'Doherty KC, Christofides E, Yen J, Bentzen HB, Burke W, Hallowell N. , et al. If you build it, they will come: unintended future uses of organised health data collections. BMC Med Ethics 2016; 17: 54
    CrossrefPubMedGoogle Scholar
  • 15 Kim KK, Joseph JG, Ohno-Machado L. Comparison of consumers'views on electronic data sharing for healthcare and research. J Am Med Inform Assoc 2015; 22: 821-30
    CrossrefPubMedGoogle Scholar
  • 16 Weitzman ER, Keleman S, Kaci L, Mandl KD. Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users. BMC Med Inform Decis Mak 2012; 12: 39
    CrossrefPubMedGoogle Scholar
  • 17 Page SA, Manhas KP, Muruve DA. A survey of patient perspectives on the research use of health information and biospecimens. BMC Med Ethics 2016; 17: 48
    CrossrefPubMedGoogle Scholar
  • 18 Aitken M, de St Jorre J, Pagliari C, Jepson R, Cunningham-Burley S. Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies. BMC Med Ethics 2016; 17: 73
    CrossrefPubMedGoogle Scholar
  • 19 Spencer K, Sanders C, Whitley EA, Lund D, Kaye J, Dixon WG. Patient perspectives on sharing anonymized personal health data using a digital system for dynamic consent and research feedback: a qualitative study. J Med Internet Res 2016; 8 (04) e66
    PubMedGoogle Scholar
  • 20 Krumholz HM. Why data sharing should be the expected norm. BMJ 2015; 350: h599
    CrossrefPubMedGoogle Scholar
  • 21 Laestadius LI, Rich JR, Auer PL. All your data (effectively) belong to us: data practices among direct-to-consumer genetic testing firms. Genet Med 2017; 19 (05) 513-20
    PubMedGoogle Scholar
  • 22 Wilbanks J, Friend SH. First, design for data sharing. Nat Biotechnol 2016; 34 (04) 377-79
    CrossrefPubMedGoogle Scholar
  • 23 Tucker K, Branson J, Dilleen M, Hollis S, Loughlin P, Nixon MJ. , et al. Protecting patient privacy when sharing patient-level data from clinical trials. BMC Med Res Methodol 2016; 16 (Suppl. 01) 77
    CrossrefPubMedGoogle Scholar
  • 24 Petersen C. The future of patient engagement in the governance of shared data. EGEMS. 2016; 4 (02) 1214
    PubMedGoogle Scholar
  • 25 Agaku IT, Adisa AO, Ayo-Yusuf OA, Connolly GN. Concern about security and privacy, and perceived control over collection and use of health information are related to withholding of health information from healthcare providers. J Am Med Inform Assoc 2014; 21: 374-8
    CrossrefPubMedGoogle Scholar
  • 26 Petersen C. Patient-generated health data: a pathway to enhanced long-term cancer survivorship. J Am Med Inform Assoc 2016; 23: 456-61
    CrossrefPubMedGoogle Scholar
  • 27 Bietz MJ, Bloss CS, Calvert S, Godino JG, Gregory J, Claffey MP. , et al. Opportunities and challenges in the use of personal health data for health research. J Am Med Inform Assoc 2016; 23: e42-8
    CrossrefPubMedGoogle Scholar
  • 28 Nash IS. It's my heart: why not my data?. Circulation 2018; 137 (01) 4-6
    CrossrefPubMedGoogle Scholar
  • 29 Hoque R, Sorwar G. Understanding factors influencing the adoption of mHealth by the elderly: an extension of the UTAUT model. Int J Med Inform 2017; 101: 75-84
    CrossrefPubMedGoogle Scholar
  • 30 Sondaal SF, Browne JL, Amoakoh-Coleman M, Borgstein A, Miltenburg AS, Verwijs M, Klipstein-Grobusch K. Assessing the effect of mHealth interventions in improving maternal and neonatal care in low- and middle-income countries: a systematic review. PLoS One 2016; 11 (05) e0154664
    CrossrefPubMedGoogle Scholar
  • 31 Brinkel J, Dako-Gyeke P, Krämer A, May J, Fobil JN. An investigation of users' attitudes, requiremetns and willingness to use mobile phone-based interactive voice response systems for seeking healthcare in Ghana: a qualitative study. Public Health 2017; 144: 125-33
    CrossrefPubMedGoogle Scholar
  • 32 Chib A, can Velthoven MH, Car J. mHealth adoption in low-resource environments: a review of the use of mobile healthcare in developing countries. J Health Commun 2015; 20 (01) 4-34
    PubMedGoogle Scholar
  • 33 Dueck AC, Mendoza TR, Mitchell SA, Reeve BB, Castro KM, Rogak LJ. , et al. Validity and reliability of the US National Cancer Institute's patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE). JAMA Oncol 2015; 1 (08) 1051-9
    CrossrefPubMedGoogle Scholar
  • 34 Basch E, Deal AM, Dueck AC, Scher HI, Kris MG, Hudis C, Schrag D. Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. JAMA 2017; 318 (02) 197-8
    CrossrefPubMedGoogle Scholar
  • 35 Harle CA, Listhaus A, Covarrubias CM, Schmidt SOF, Macket S, Carek PJ. , et al. Overcoming barriers to implementing patient-reported outcomes in an electronic health record: a case report. J Am Med Inform Assoc 2016; 23 (01) 74-9
    CrossrefPubMedGoogle Scholar
  • 36 Basch E, Snyder C. Overcoming barriers to integrating patient-reported outcomes in clinical practice and electronic health records. Ann Oncol 2017; 28 (10) 2332-3
    CrossrefPubMedGoogle Scholar
  • 37 Lippert C, Sabatini R, Maher MC, Kang EY, Lee S, Arikan O. , et al. Identification of individuals by trait prediction using whole-genome sequencing data. Proc Natl Acad Sci U S A 2017; 114 (38) 10166-71
    CrossrefPubMedGoogle Scholar
  • 38 Kushida CA, Nichols DA, Jadrnicek R, Miller R, Walsh JK, Griffin K. Strategies for de-identification and anonymization of electronic health record data for use in multicenter research studies. Med Care 2012; 50 Suppl: S82-101
    PubMedGoogle Scholar
  • 39 Müthing J, Jäschke T, Friedrich CM. Client-focused security assessment of mHealth apps and recommended practices to prevent or mitigate transport security issues. JMIR Mhealth Uhealth 2017; 5 (10) e147
    CrossrefPubMedGoogle Scholar
  • 40 Dehling T, Gao F, Schneider S, Sunyaev A. Exploring the far side of mobile health: information security and privacy of mobile health apps on iOS and Android. JMIR Mhealth Uhealth 2015; 3 (01) e8
    CrossrefPubMedGoogle Scholar
  • 41 Martinez-Pérez B, de la Torre-Díez I, López-Coronado M. Privacy and security in mobile health apps: a review and recommendations. J Med Syst 2015; 39 (01) 181
    CrossrefPubMedGoogle Scholar