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Health Information Systems in the Digital Health Ecosystem-Problems and Solutions for Ethics, Trust and Privacy

. 2020 Apr 26 ; 17 (9) : . [epub] 20200426

Language English Country Switzerland Media electronic

Document type Journal Article

Digital health information systems (DHIS) are increasingly members of ecosystems, collecting, using and sharing a huge amount of personal health information (PHI), frequently without control and authorization through the data subject. From the data subject's perspective, there is frequently no guarantee and therefore no trust that PHI is processed ethically in Digital Health Ecosystems. This results in new ethical, privacy and trust challenges to be solved. The authors' objective is to find a combination of ethical principles, privacy and trust models, together enabling design, implementation of DHIS acting ethically, being trustworthy, and supporting the user's privacy needs. Research published in journals, conference proceedings, and standards documents is analyzed from the viewpoint of ethics, privacy and trust. In that context, systems theory and systems engineering approaches together with heuristic analysis are deployed. The ethical model proposed is a combination of consequentialism, professional medical ethics and utilitarianism. Privacy enforcement can be facilitated by defining it as health information specific contextual intellectual property right, where a service user can express their own privacy needs using computer-understandable policies. Thereby, privacy as a dynamic, indeterminate concept, and computational trust, deploys linguistic values and fuzzy mathematics. The proposed solution, combining ethical principles, privacy as intellectual property and computational trust models, shows a new way to achieve ethically acceptable, trustworthy and privacy-enabling DHIS and Digital Health Ecosystems.

See more in PubMed

Ruotsalainen P., Blobel B. Trust—Essential Requirement and Basis for pHealth Services. In: Blobel B., Goossen W., editors. pHealth 2017, Studies in Health Technology and Informatics. Volume 237. IOS Press; Berlin, Germany: 2017. pp. 25–33. PubMed DOI

Ruotsalainen P., Blobel B. Digital pHealth—Problems and solutions for Ethics, Trust and Privacy. In: Blobel B., Giacomini M., editors. pHealth 2019, Studies in Health Technology and Informatics. Volume 261. IOS Press; Berlin, Germany: 2019. pp. 31–46. PubMed DOI

Blobel B. Challenges and Solutions for Designing and Managing pHealth Ecosystems. Front. Med. 2019;6:83. doi: 10.3389/fmed.2019.00083. PubMed DOI PMC

Blobel B., Ruotsalainen P. How Does GDPR Support Healthcare Transformation to 5P Medicine? In: Ohno-Machado L., Séroussi B., editors. MEDINFO 2019, Studies in Health Technology and Informatics. Volume 264. IOS Press; Berlin, Germany: 2019. pp. 1135–1139. PubMed

Raghupathi W., Raghupathi V. Big data analytics in healthcare: Promise and potential. Health Inf. Sci. Syst. 2014;2:3. doi: 10.1186/2047-2501-2-3. PubMed DOI PMC

Van Dijck J., Poell T. Understanding the promises and premises of online health platforms. Big Data Soc. 2016;3:1–11. doi: 10.1177/2053951716654173. DOI

President’s Council of Advisors on Science and Technology, Report to the President, Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: The Path Forward, President’s Council of Advisors on Science and Technology. [(accessed on 25 April 2020)];2010 Dec; Available online: https://www.broadinstitute.org/files/sections/about/PCAST/2010%20pcast-health-it.pdf.

Nissenbaum H. Washington Law Review. Volume 79. George Washington University Law School; Washington, DC, USA: 2004. Privacy as Contextual Integrity; pp. 119–157.

O’Connor Y., Rowan W., Lynch L., Heavin C. Privacy by Design: Informed Consent and Internet of Things for Smart Health. Procedia Comput. Sci. 2017;113:653–658. doi: 10.1016/j.procs.2017.08.329. DOI

Müller R., Andersen E.S., Kvalnes Ø., Shao J., Sankaran S., Turner J.R., Biesenthal C., Walker D., Gudergan S. The Interrelationship of Governance, Trust, and Ethics in Temporary Organizations. Proj. Manag. J. 2013;44:26–44. doi: 10.1002/pmj.21350. DOI

Serbanati L.D., Ricci F.L., Mercurio G., Vasilaetanu A. Steps towards a digital health ecosystem. J. Biomed. Informatics. 2011;44:621–636. doi: 10.1016/j.jbi.2011.02.011. PubMed DOI

Kuo A.M.-H. Opportunities and Challenges of Cloud Computing to Improve Health Care Services. J. Med Internet Res. 2011;13:e67. doi: 10.2196/jmir.1867. PubMed DOI PMC

Li F., Zou X., Liu P., Chen J.Y. New threats to health data privacy. BMC Bioinform. 2011;12:S7. doi: 10.1186/1471-2105-12-S12-S7. PubMed DOI PMC

Zyskind G., Nathan O., Pentland A.S. Decentralizing Privacy: Using Blockchain to Protect Personal Data; Proceedings of the 2015 IEEE Security and Privacy Workshops; San Jose, CA, USA. 21–22 May 2015; pp. 180–184.

Joinson A., Houghton D.J., Vasalou A., Marder B.L. Privacy Online. Springer Science and Business Media LLC; Berlin, Germany: 2011. Digital Crowding: Privacy, Self-Disclosure, and Technology; pp. 33–45.

Hosmer L.T. Trust: The Connecting Link between Organizational Theory and Philosophical Ethics. Acad. Manag. Rev. 1995;20:379. doi: 10.5465/amr.1995.9507312923. DOI

Smith H.J., Xu T.D. Information Privacy Research: An Interdisciplinary Review. MIS Q. 2011;35:989. doi: 10.2307/41409970. DOI

Walsham J.M. Toward Ethical Information Systems: The Contribution of Discourse Ethics. MIS Q. 2010;34:833. doi: 10.2307/25750707. DOI

Floridi L. The Cambridge Handbook of Information and Computer Ethics. Cambridge University Press; Cambridge, UK: 2010. pp. 1–344.

Association for Computing Machinery, ACM Code of Ethics and Professional Conduct. [(accessed on 25 April 2020)]; Available online: https://www.acm.org/code-of-ethics.

International Medical Informatics Association, the IMIA Code of Ethics for Health Information Professionals. [(accessed on 25 April 2020)]; Available online: https://imia-medinfo.org/wp/wp-content/uploads/2015/07/IMIA-Code-of-Ethics-2016.pdf.

Hamman W.S., Zaiane O.R., Sobsey D. Towards a definition of health Informatics Ethics; Proceedings of the ACM International Health Informatics Symposium 2010 (IHI’10); Arlington, VA, USA. 11–12 November 2010.

Moor J.H. What is Computer Ethics? Metaphilosophy. 1985;16:266–275. doi: 10.1111/j.1467-9973.1985.tb00173.x. DOI

Alexander L., Moore M. Deontological Ethics, Stanford Encyclopedia of Philosophy. Center for the Study of Language and Information (CSLI), Stanford University; Stanford, CA, USA: 2007. [(accessed on 25 April 2020)]. Library of Congress Catalog Data: ISSN 1095-5054. Available online: https://www.google.com/search?client=firefox-b-d&q=deontology+stanford.

Markkula Center for Applied Ethics, Calculating Consequences: The Utilitarian Approach to Ethics, Issues in Ethics V2 N1 (Winter 1989), Santa Clara University, Santa Clara, CA, USA, 1 August 2014. [(accessed on 25 April 2020)]; Available online: https://www.scu.edu/ethics/ethics-resources/ethical-decision-making/calculating-consequences-the-utilitarian-approach/

Hursthouse R., Pettigrove G. Virtue Ethics. Stanford Encyclopedia of Philosophy. Center for the Study of Language and Information (CSLI), Stanford University; Stanford, CA, USA: 2003. [(accessed on 25 April 2020)]. Library of Congress Catalog Data: ISSN 1095-5054. Available online: https://plato.stanford.edu/entries/ethics-virtue/

Hasnas J. The normative theories of business ethics: A guide for the perplexed. Bus. Ethics Q. 1998;8:19–42. doi: 10.2307/3857520. DOI

Blobel B. Series Studies in Health Technology and Informatics. Volume 89 IOS Press; Berlin, Germany: 2002. Analysis, design and implementation of secure and interoperable distributed health information systems. PubMed

WHO Universal Declaration of Human Rights. [(accessed on 25 April 2020)]; Available online: http://www.un.org/en universal-declaration-human-rights/

Zwick D., Dholakia N. Models of Privacy in the Digital Age: Implications for Marketing and E-Commerce. [(accessed on 25 April 2020)];1999 Sep; Available online: https://pdfs.semanticscholar.org/a9ab/517b26f42798c15e2c840c3b6 659d6e96578.pdf.

Marguilis S.T. Three Theories of Privacy: An Overview. In: Trepete S., Reinecke L., editors. Privacy Online: Perspectives on Privacy and Self-Disclosure in the Social Web. Springer; Berlin, Germany: 2011.

Marguilis S.T. Privacy as a Social Issue and Behavioral Concept. J. Soc. Issues. 2003;59:243–261. doi: 10.1111/1540-4560.00063. DOI

Ruotsalainen P., Blobel B. Trust Information and Privacy Polices—Enablers for pHealth and Ubiquitous Health. In: Blobel B., Sauermann S., Mense A., editors. pHealth 2014, Studies in Health Technology and Informatics. Volume 200. IOS Press; Amsterdam, The Netherlands: Berlin, Germany: Washington DC, USA: 2014. pp. 133–139. PubMed DOI

Bricon-Souf N., Newman C.R. Context awareness in health care: A review. Int. J. Med Inform. 2007;76:2–12. doi: 10.1016/j.ijmedinf.2006.01.003. PubMed DOI

Westin A.F. Social and Political Dimensions of Privacy. J. Soc. Issues. 2003;59:431–453. doi: 10.1111/1540-4560.00072. DOI

Ackerman M., Darrell T., Weitzner D.J. Privacy in Context. Hum. Comput. Interact. 2001;16:167–176. doi: 10.1207/S15327051HCI16234_03. DOI

Moloney M., Bannister F.E. A Privacy Control Theory for Online Environments; Proceedings of the 42nd Hawaii International Conference on System Science (HICSS-42); Waikoloa, HI, USA. 5–8 January 2009.

Yao M.Z. Self-Protecting of On-line Privacy: Behavioral Approach Privacy Online. In: Trepte S., Reinecke L., editors. Privacy OnLine Perspectives on Privacy and Self-Disclosure in the Social Web. Springer; Berlin/Heidelberg, Germany: 2011. Chapter 9.

Vasalou A., Joinson A., Houghton D. Privacy as a fuzzy concept: A new conceptualization of privacy for practitioners. J. Assoc. Inf. Sci. Technol. 2014;66:918–929. doi: 10.1002/asi.23220. DOI

Solove D.J. A Taxonomy of Privacy. Univ. PA Law Rev. 2006;154:477–560. doi: 10.2307/40041279. DOI

Babuska R. Fuzzy Systems, Modeling and Identification. [(accessed on 25 April 2020)];Electr. Eng. 2001 Available online: https://www.researchgate.net/publication/228769192_Fuzzy_Systems_Modeling_and_Identification.

European Union GDPR Regulation Article 24. [(accessed on 25 April 2020)]; Available online: http://www.privacy-regulation.eu/en/article-24-responsibility-of-the-controller-GDPR.htm.

Bhatia J., Breaux T.D. Empirical Measurement of Perceived Privacy Risk. ACM Trans. Comput. Interact. 2018;25:1–47. doi: 10.1145/3267808. DOI

International Standards Organization . ISO 22600: 2014 Privilege Management and Access Control. ISO; Geneva, Switzerland: 2014.

Blobel B., Davis M., Ruotsalainen P.S. Policy Management Standards Enabling Trustworthy pHealth. In: Blobel B., Sauermann S., Mense A., editors. pHealth 2014, Studies in Health Technology and Informatics. Volume 200. IOS Press; Berlin, Germany: 2014. pp. 8–20. PubMed

Blobel B., Lopez D.M., Gonzalez C. Patient privacy and security concerns on big data for personalized medicine. Health. Technol. 2016;6:75–81. doi: 10.1007/s12553-016-0127-5. DOI

Marsden C. How law and computer science can work together to improve the information society. Commun. ACM. 2017;61:29–31. doi: 10.1145/3163907. DOI

Asfari A.R., Niclolic M., Akbari Z. Personnel selection of using group fuzzy AHP and Saw methods. J. Eng. Manag. Compet. 2017;7:3–10.

Ansari A.Q. The Basics of Fuzzy Logic: A Tutorial Review. Comput. Educ. 1998;88:5–9.

Torra V., Abril D., Navarro-Arribas G. Fuzzy Methods for Database Protection, EUSFLAT-LFA 2011, a Position Paper, for Contextual Data Control. [(accessed on 25 April 2020)]; Available online: https://www.researchgate.net/ publication/263129216_Fuzzy_methods_for_database_protection.

Eldin A.A., Wagenaar R. A Fuzzy Logic Based Approach to Support Users Self Control of Their Private Contextual Data Retrieval. [(accessed on 25 April 2020)]; ECIS 2004 Proceedings. 32. Available online: http://aisel.aisnet.org/ecis2004/32.

Aghasian E., Garg S., Gao L., Yu S., Montgomery J. Scoring Users’ Privacy Disclosure Across Multiple Online Social Networks. IEEE Access. 2017;5:13118–13130. doi: 10.1109/ACCESS.2017.2720187. DOI

Afzali G.A., Mohammadi S. Privacy preserving big data mining: Association rule hiding using fuzzy logic approach. IET Inf. Secur. 2018;12:15–24. doi: 10.1049/iet-ifs.2015.0545. DOI

Gambetta D. Trust: Making and Breaking Cooperative Relations. Blackwell Pub; New York, NY, USA: 1988. [(accessed on 25 April 2020)]. Available online: https://www.nuffield.ox.ac.uk/users/gambetta/Trust_making%20and%%20cooperative%20relations.pdf.

Beldad A., De Jong M.D.T., Steehouder M. How shall I trust the faceless and the intangible? A literature review on the antecedents of online trust. Comput. Hum. Behav. 2010;26:857–869. doi: 10.1016/j.chb.2010.03.013. DOI

Ruotsalainen P.S., Blobel B., Seppälä A., Nykänen P., Rigby M., Rogers M., Willison D. Trust Information-Based Privacy Architecture for Ubiquitous Health. JMIR mHealth uHealth. 2013;1:e23. doi: 10.2196/mhealth.2731. PubMed DOI PMC

Krukow K., Nielsen M., Sassone V. Trust models in ubiquitous computing. Philos. Trans. R. Soc. A Math. Phys. Eng. Sci. 2008;366:3781–3793. doi: 10.1098/rsta.2008.0134. PubMed DOI

Mahony M. Online Consumer Protection. IGI Global; Hershey, PA, USA: 2009. Theories of Human Relativism.

Jøsang A., Ismail R., Boyd C. A survey of trust and reputation systems for online service provision. Decis. Support Syst. 2007;43:618–644. doi: 10.1016/j.dss.2005.05.019. DOI

McKnight D.H., Choudhury V., Kacmar C. Developing and Validating Trust Measures for e-Commerce: An Integrative Typology. Inf. Syst. Res. 2002;13:334–359. doi: 10.1287/isre.13.3.334.81. DOI

Papadopoulou P., Andreou A., Kanellis P., Martakos D. Trust and relationship building in electronic commerce. Internet Res. 2001;11:322–332. doi: 10.1108/10662240110402777. DOI

Schoorman F.D., Mayer R.C., Davis J.H. An Integrative Model of Organizational Trust: Past, Present, and Future. Acad. Manag. Rev. 2007;32:344–354. doi: 10.5465/amr.2007.24348410. DOI

Abdui-Rahman A.A., Hailes S. A Distributed Trust Model. In Proceedings of the 1997 New Security Paradigms Workshop Langdale, Cumbria, UK. [(accessed on 25 April 2020)]; Available online: https://www.nspw.org/papers/1997/nspw1997-rahman.pdf.

O’Donovan J., Smyth B. Trust in Recommender Systems; Proceedings of the International Conference of Intelligent of User Interfaces IUI’05; San Diego, CA, USA. 9–12 January 2005.

Babuška R. Fuzzy Systems, Modeling and Identification. [(accessed on 25 April 2020)];Electr. Eng. 2001 Available online: https://www.researchgate.net/profile/Robert_Babuska/publication/228769192_Fuzzy_Systems_Modeling_and_Identification/links/02e7e5223310e79d19000000/Fuzzy-Systems-Modeling-and-Identification.pdf.

Sabater J., Sierra C. Review on Computational Trust and Reputation Models. Artif. Intell. Rev. 2005;24:33–60. doi: 10.1007/s10462-004-0041-5. DOI

Ruotsalainen P., Blobel P. Trust Model for Protection of Personal Health Data in a Global Environment. In: Gundlapalli A.V., Jaulent M.-C., Zhao D., editors. MEDINFO 2017, Studies in Health Technology and Informatics. Volume 245. IOS Press; Berlin, Germany: 2017. pp. 202–206. PubMed

Herrera F., Herrera-Viedma E. Linguistic decision analysis: Steps for solving decision problems under linguistic information. Fuzzy Sets Syst. 2000;115:67–82. doi: 10.1016/S0165-0114(99)00024-X. DOI

Castelfranchi C., Falcone R., Pezzulo G. Trust in information sources as a source for trust; Proceedings of the Second International Joint Conference on Autonomous Agents and Multiagent Systems; Melbourne, Australia. 14–18 July 2003; pp. 89–96.

Keshwani D., Jones D.D., Meyer G.E., Brand R.M. Rule-based Mamdani-type fuzzy modeling of skin permeability. Appl. Soft Comput. 2008;8:285–294. doi: 10.1016/j.asoc.2007.01.007. DOI

Jakubczyk M. Multiplecriteria Decision Making. Volume 10 Springer; Berlin/Heidelberg, Germany: 2015. Using a Fuzzy Approach in Multi-criteria Decision Making with Multiple Alternatives in Health Care.

Bates J.H.T., Young M.P. Applying Fuzzy Logic to Medical Decision Making in the Intensive Care Unit. Am. J. Respir. Crit. Care Med. 2003;167:948–952. doi: 10.1164/rccm.200207-777CP. PubMed DOI

Cai Z., Chen J., Luo Y. A Fuzzy Trust Measurement Method for Mobile E-Commerce. Int. J. Eng. Pr. Res. 2015;4:115–122. doi: 10.12783/ijepr.2015.0402.02. DOI

Dechouniotis D., Dimolitsas I., Papadakis-Vlachopapadopoulos K., Papavassiliou S. Fuzzy Multi-Criteria Based Trust Management in Heterogeneous Federated Future Internet Testbeds. Futur. Internet. 2018;10:58. doi: 10.3390/fi10070058. DOI

Athanasiou G., Anastassopoulos G.C., Tiritidou E., Lymberopoulos D. A Trust Model for Ubiquitous Healthcare Environment on the Basis of Adaptable Fuzzy-Probabilistic Inference System. IEEE J. Biomed. Health Inform. 2017;22:1288–1298. doi: 10.1109/JBHI.2017.2733038. PubMed DOI

Lederer S., Dey A.K., Mankoff J. A Conceptual Model and a Metaphor of Everyday Privacy in Ubiquitous Computing Environments. University of California; Berkeley, CA, USA: 2002. [(accessed on 25 April 2020)]. Technical Report. Available online: https://www2.eecs.berkeley.edu/Pubs/TechRpts/2002/CSD-02-1188.pdf.

Blobel B., Ruotsalainen P. MIE 2020, Series Studies in Health Technology and Informatics. IOS Press; Berlin, Germany: 2020. Autonomous Systems and Artificial Intelligence in Healthcare Transformation to 5P Medicine—Ethical Challenges. in print. PubMed

Ruotsalainen P., Pharow P., Petersen F. Privacy Management and Networked PPD Systems—Challenges Solutions. In: Blobel B., Lindén M., Ahmed M.U., editors. pHealth 2015, Series Studies in Health Technology and Informatics. Volume 211. IOS Press; Berlin, Germany: 2015. pp. 271–279. PubMed

Ruotsalainen P., Blobel B. A Model for Calculated Privacy and Trust in pHealth Ecosystems. In: Blobel B., Yang B., editors. pHealth 2018, Series Studies in Health Technology and Informatics. Volume 249. IOS Press; Berlin, Germany: 2018. pp. 29–37. PubMed DOI

Ritter J., Mayer A. Regulating data as property: A new construct for moving forward. [(accessed on 25 April 2020)];Duke Law Technol. Rev. 2018 16:220–277. Available online: https://scholarship.law.duke.edu/cgi/viewcontent.cgi?article= 1320&context=dltr.

Trackman L., Walters R., Zeller B. International Review of Intellectual Property and Competition Law. University of Western Australia Faculty of Law; Crawley, Australia: 2019. Is privacy and personal data set to become the new intellectual property?

Landwehr C. Privacy and security—We need a building code for building code. Commun. ACM. 2015;58:24–26. doi: 10.1145/2700341. DOI

International Standards Organization . ISO 23903:2020 Interoperability and Integration Reference Architecture. ISO; Geneva, Switzerland: 2020.

International Standards Organization . ISO/IEC 21838:2019 Top-Level Ontologies (TLO) ISO; Geneva, Switzerland: 2019.

Health Level 7 International . HL7 Version 3 Standard: Privacy, Access and Security Services (PASS)—Access Control Services Conceptual Model, Release 1. HL7; Ann Arbor, MI, USA: 2015. [(accessed on 25 April 2020)]. Available online: https://www.hl7.org/implement/standards/product_brief.cfm?product_id=73.

Hong J.I., Ng J.D., Lederer S., Landay J.A. Privacy Risk Models for Designing Privacy Sensitive Ubiquitous Computing Systems. Human-Computer Interaction Institute, Carnegie Mellon University 2004, Paper 69. [(accessed on 25 April 2020)]; Available online: https://www.cs.cmu.edu/~jasonh/publications/ dis2004-privacy-risk -model-final.pdf.

Kifer D., Machanavajjhala A. Pufferfish: A Framework for Mathematical Privacy Definitions. ACM Trans. Database Syst. 2014;39:1–36. doi: 10.1145/2514689. DOI

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