CC BY-NC-ND 4.0 · Yearb Med Inform 2020; 29(01): 104-114
DOI: 10.1055/s-0040-1701996
Section 3: Clinical Information Systems
Survey
Georg Thieme Verlag KG Stuttgart

Clinical Information Systems – Seen through the Ethics Lens

Ursula H. Hübner
1   Health Informatics Research Group, Dept. Business Management and Social Sciences Hochschule Osnabrück, Germany
1   Health Informatics Research Group, Dept. Business Management and Social Sciences Hochschule Osnabrück, Germany
,
Nicole Egbert
1   Health Informatics Research Group, Dept. Business Management and Social Sciences Hochschule Osnabrück, Germany
,
Georg Schulte
1   Health Informatics Research Group, Dept. Business Management and Social Sciences Hochschule Osnabrück, Germany
› Institutsangaben
Weitere Informationen

Publikationsverlauf

Publikationsdatum:
21. August 2020 (online)

Summary

Objective: The more people there are who use clinical information systems (CIS) beyond their traditional intramural confines, the more promising the benefits are, and the more daunting the risks will be. This review thus explores the areas of ethical debates prompted by CIS conceptualized as smart systems reaching out to patients and citizens. Furthermore, it investigates the ethical competencies and education needed to use these systems appropriately.

Methods: A literature review covering ethics topics in combination with clinical and health information systems, clinical decision support, health information exchange, and various mobile devices and media was performed searching the MEDLINE database for articles from 2016 to 2019 with a focus on 2018 and 2019. A second search combined these keywords with education.

Results: By far, most of the discourses were dominated by privacy, confidentiality, and informed consent issues. Intertwined with confidentiality and clear boundaries, the provider-patient relationship has gained much attention. The opacity of algorithms and the lack of explicability of the results pose a further challenge. The necessity of sociotechnical ethics education was underpinned in many studies including advocating education for providers and patients alike. However, only a few publications expanded on ethical competencies. In the publications found, empirical research designs were employed to capture the stakeholders’ attitudes, but not to evaluate specific implementations.

Conclusion: Despite the broad discourses, ethical values have not yet found their firm place in empirically rigorous health technology evaluation studies. Similarly, sociotechnical ethics competencies obviously need detailed specifications. These two gaps set the stage for further research at the junction of clinical information systems and ethics.

 
  • References

  • 1 Evans RS. Electronic health records: then, now, and in the future. Yearb Med Inform 2016; 48-61
  • 2 Zelmer J, Ronchi E, Hyppönen H, Lupiáñez-Villanueva F, Codagnone C, Nøhr C. et al. International health IT benchmarking: learning from cross-country comparisons. J Am Med Inform Assoc 2017; 24 (02) 371-9
  • 3 Esdar M, Hüsers J, Weiß JP, Rauch J, Hübner U. Diffusion dynamics of electronic health records: A longitudinal observational study comparing data from hospitals in Germany and the United States. Int J Med Inform 2019; 131: 103952
  • 4 Hüsers J, Hübner U, Esdar M, Ammenwerth E, Hackl WO, Naumann L. et al. Innovative Power of Health Care Organisations Affects IT Adoption: A bi-National Health IT Benchmark Comparing Austria and Germany. J Med Syst 2017; 41 (02) 33
  • 5 Kim YG, Jung K, Park YT, Shin D, Cho SY, Yoon D. et al Rate of electronic health record adoption in South Korea: A nation-wide survey. Int J Med Inform 2017; 101: 100-7
  • 6 Adler-Milstein J, Jha AK. HITECH Act Drove Large Gains In Hospital Electronic Health Record Adoption. Health Aff (Millwood) 2017; 36 (08) 1416-22
  • 7 Everson J, Adler-Milstein J. Sharing information electronically with other hospitals is associated with increased sharing of patients. Health Serv Res 2002; 55 (01) 128-35
  • 8 Haux R, Ammenwerth E, Koch S, Lehmann CU, Park HA, Saranto K. et al A brief survey on six basic and reduced eHealth indicators in seven countries in 2017. Appl Clin Inform 2018; 9: 704-13
  • 9 Vehko T, Hyppönen H, Puttonen S, Kujala S, Ketola E, Tuukkanen J. et al. Experienced time pressure and stress: electronic health records usability and information technology competence play a role. BMC Med Inform Decis Mak 2019; 19 (01) 160
  • 10 Gesner E, Gazarian P, Dykes P. The Burden and Burnout in Documenting Patient Care: An Integrative Literature Review. Stud Health Technol Inform 2019; 264: 1194-8
  • 11 Kaipio J, Hyppönen H, Lääveri T. Physicians’ Experiences on EHR Usability: A Time Series from 2010, 2014 and 2017. Stud Health Technol Inform 2019; 257: 194-9
  • 12 Gardner RM. Clinical Information Systems - From Yesterday to Tomorrow. Yearb Med Inform 2016; 1 (Suppl 1): S62-S75
  • 13 Hackl WO, Hoerbst A. Managing Complexity. From Documentation to Knowledge Integration and Informed Decision Findings from the Clinical Information Systems Perspective for 2018. Yearb Med Inform 2019; 28 (01) 95-100
  • 14 Tran BX, Vu GT, Ha GH, Vuong QH, Ho MT, Vuong TT. et al. Global Evolution of Research in Artificial Intelligence in Health and Medicine: A Bibliometric Study. J Clin Med 2019; 8 (03) 360
  • 15 Hübner U, Shaw T, Thye J, Egbert N, de Fatima Marin H, Chang P. et al. Technology Informatics Guiding Education Reform – TIGER. Methods Inf Med 2018; 57 (Open 1): e30-e42
  • 16 Egbert N, Thye J, Hackl WO, Müller-Staub M, Ammenwerth E, Hübner U. Competencies for nursing in a digital world. Methodology, results, and use of the DACH-recommendations for nursing informatics core competency areas in Austria, Germany, and Switzerland. Inform Health Soc Care 2018; 1-25
  • 17 Goodman KW. Health Information Technology as a Universal Donor to Bioethics Education. Camb Quarterly Healthc Ethics 2017; 26: 341-7
  • 18 Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 8th ed. Oxford University Press; 2019 (first published in 1977)
  • 19 Moher D, Liberati A, Tetzlaff J, Altman DG. The PRISMA Group. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med 2009; 6 (07) e1000097
  • 20 McWilliams C, Inoue J, Wadey P, Palmer G, Santos-Rodriguez R, Bourdeaux C. Curation of an intensive care research dataset from routinely collected patient data in an NHS trust. F1000Res 2019; 8: 1460
  • 21 Kogetsu A, Ogishima S, Kato K. Authentication of Patients and Participants in Health Information Exchange and Consent for Medical Research: A Key Step for Privacy Protection, Respect for Autonomy, and Trustworthiness. Front Genet 2018; 9: 167
  • 22 Moscatelli M, Manconi A, Pessina M, Fellegara G, Rampoldi S, Milanesi L. , et al. An infrastructure for precision medicine through analysis of big data. BMC Bioinformatics 2018; 19 (Suppl 10): 351
  • 23 Lehmann CU, Petersen C, Bhatia H, Berner ES, Goodman KW. Advance Directives and Code Status Information Exchange: A Consensus Proposal for a Minimum Set of Attributes. Camb Q Healthc Ethics 2019; 28 (01) 178-85
  • 24 Sanelli-Russo S, Folkers KM, Sakolsky W, Fins JJ, Dubler NN. Meaningful Use of Electronic Health Records for Quality Assessment and Review of Clinical Ethics Consultation. J Clin Ethics 2018; 29 (01) 52-61
  • 25 Davenport T, Kalakota R. The potential for artificial intelligence in healthcare. Future Healthc J 2019; 6 (02) 94-8
  • 26 Graham S, Depp C, Lee EE, Nebeker C, Tu X, Kim HC. , et al. Artificial Intelligence for Mental Health and Mental Illnesses: an Overview. Curr Psychiatry Rep 2019; 21 (11) 116
  • 27 Rashidi P, Edwards DA, Tighe PJ. Primer on machine learning: utilization of large data set analyses to individualize pain management. Curr Opin Anaesthesiol 2019; 32 (05) 653-60
  • 28 Erikainen S, Pickersgill M, Cunningham-Burley S, Chan S. Patienthood and participation in the digital era. Digit Health 2019; Apr 23; 5: 1-10
  • 29 Duckett S. Australia’s new digital health record created ethical dilemmas. Healthc Manage Forum 2019; 32 (03) 167-8
  • 30 Meredith J, McCarthy S, Hemsley B. Legal and Ethical Issues Surrounding the Use of Older Children’s Electronic Personal Health Records. J Law Med 2018; 25 (04) 1042-55
  • 31 de Riel E, Puttkammer N, Hyppolite N, Diallo J, Wagner S, Honoré JG. , et al. Success factors for implementing and sustaining a mature electronic medical record in a low-resource setting: a case study of iSanté in Haiti. Health Policy Plan 2018; 33 (02) 237-46
  • 32 Wilburn A. Nursing Informatics: Ethical Considerations for Adopting Electronic Records. NASN Sch Nurse 2018; 33 (03) 150-3
  • 33 Brisson GE, Barnard C, Tyler PD, Liebovitz DM, Neely KJ. A Framework for Tracking Former Patients in the Electronic Health Record Using an Educational Registry. J Gen Intern Med 2018; 33 (04) 563-6
  • 34 Sánchez MC, Sarría-Santamera A. Unlocking data: Where is the key?. Bioethics 2019
  • 35 Carter SM, Rogers W, Win KT, Frazer H, Richards B, Houssami N. The ethical, legal and social implications of using artificial intelligence systems in breast cancer care. Breast 2019; 49: 25-32
  • 36 Boers SN, Jongsma KR, Lucivero F, Aardoom J, Büchner FL, de Vries M. et al. SERIES: eHealth in primary care. Part 2: Exploring the ethical implications of its application in primary care practice. Eur J Gen Pract 2019; 1-7
  • 37 Loftus TJ, Tighe PJ, Filiberto AC, Efron PA, Brakenridge SC, Mohr AM. et al. Artificial Intelligence and Surgical Decision-Making. JAMA Surg 2019; 10: 1001
  • 38 Baldini G, Botterman M, Neisse R, Tallacchini M. Ethical Design in the Internet of Things. Sci Eng Ethics 2018; 24: 905-925
  • 39 Musher DM, Hayward CP, Musher BL. Physician Integrity, Templates, and the ‘F’ Word. J Emerg Med 2019; 57 (02) 263-5
  • 40 McBride S, Tietze M, Robichaux C, Stokes L, Weber E. Identifying and Addressing Ethical Issues with Use of Electronic Health Records. Online J Issues Nurs 2018 23. (1):Manuscript 5
  • 41 Robichaux C, Tietze M, Stokes F, McBride S. Reconceptualizing the Electronic Health Record for a New Decade: A Caring Technology?. ANS Adv Nurs Sci 2019; 42 (03) 193-205
  • 42 Stockdale J, Cassell J, Ford E. “Giving something back”: A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland. Wellcome Open Res 2019; 3: 6
  • 43 Natsiavas P, Kakalou C, Votis K, Tzovaras D, Koutkias V. Citizen Perspectives on Cross-Border eHealth Data Exchange: A European Survey. Stud Health Technol Inform 2019; 264: 719-23
  • 44 Pathak PR, Chou A. Confidential Care for Adolescents in the U.S. Health Care System. J Patient Cent Res Rev 2019; 6 (01) 46-50
  • 45 Bourla A, Ferreri F, Ogorzelec L, Peretti CS, Guinchard C, Mouchabac S. Psychiatrists’ Attitudes Toward Disruptive New Technologies: Mixed-Methods Study. JMIR Ment Health 2018; 5 (04) e10240
  • 46 Gooding P. Mapping the rise of digital mental health technologies: Emerging issues for law and society. Int J Law Psychiatry 2019; 67: 101498
  • 47 Evans EL, Whicher D. What Should Oversight of Clinical Decision Support Systems Look Like?. AMA J Ethics 2018; 20 (09) E857-E863
  • 48 Galvin HK, Petersen C, Subbian V, Solomonides A. Patients as Agents in Behavioral Health Research and Service Provision: Recommendations to Support the Learning Health System. Appl Clin Inform 2019; 10 (05) 841-8
  • 49 Brill SB, Moss KO, Prater L. Transformation of the Doctor-Patient Relationship: Big Data, Accountable Care, and Predictive Health Analytics. HEC Forum 2019; 31 (04) 261-82
  • 50 Macdonald GG, Townsend AF, Adam P, Li LC, Kerr S, McDonald M. et al. eHealth Technologies, Multimorbidity, and the Office Visit: Qualitative Interview Study on the Perspectives of Physicians and Nurses. J Med Internet Res 2018; 20 (01) e31
  • 51 Mars M, Morris C, Scott RE. Selfie Telemedicine - What Are the Legal and Regulatory Issues?. Stud Health Technol Inform 2018; 254: 53-62
  • 52 Eberlin KR, Perdikis G, Damitz L, Krochmal DJ, Kalliainen LK, Bonawitz SC. Electronic Communication in Plastic Surgery: Guiding Principles from the American Society of Plastic Surgeons Health Policy Committee. Plast Reconstr Surg 2018; 141 (02) 500-5
  • 53 Kuhnel L. TTaPP: Together Take a Pause and Ponder: A Critical Thinking Tool for Exploring the Public/Private Lives of Patients. J Clin Ethics 2018; 29 (02) 102-13
  • 54 Gensheimer SG, Wu AW, Snyder CF. Oh, the Places We’ll Go: Patient-Reported Outcomes and Electronic Health Records. Patient 2018; 11 (06) 591-8
  • 55 Ashton K, Sullivan A. Ethics and Confidentiality for Psychologists in Academic Health Centers. J Clin Psychol Med Settings 2018; 25 (03) 240-9
  • 56 Ienca M, Wangmo T, Jotterand F, Kressig RW, Elger B. Ethical Design of Intelligent Technologies for Dementia: A Descriptive Review. Sci Eng Ethics 2018; 24: 1035-55
  • 57 Ho A, Quick O. Leaving patients to their own devices? Smart technology, safety and therapeutic relationships. BMC Med Ethics 2018; 19 (01) 18
  • 58 Laurie GT. Cross-Sectoral Big Data: The Application of an Ethics Framework for Big Data in Health and Research. Asian Bioeth Rev 2019; 11 (03) 327-39
  • 59 Modell SM, Citrin T, Kardia SLR. Laying Anchor: Inserting Precision Health into a Public Health Genetics Policy Course. Healthcare (Basel) 2018 6. (3)
  • 60 Estrada-Hernandez N, Bahr P. Ethics and assistive technology: Potential issues for AT service providers. Assist Technol 2019; 24: 1-7
  • 61 Alshakhs F, Alanzi T. The evolving role of social media in health-care delivery: measuring the perception of health-care professionals in Eastern Saudi Arabia. J Multidiscip Healthc 2018; 11: 473-9
  • 62 Demiray A, Çakar M, Açil A, Ilaslan N, Savas Yucel T. Social media use and ethics violations: Nurses’ responses to hypothetical cases. Int Nurs Rev 2019; 1-8
  • 63 Bopp T, Vadeboncoeur JD, Stellefson M, Weinsz M. Moving Beyond the Gym: A Content Analysis of YouTube as an Information Resource for Physical Literacy. Int J Environ Res Public Health 2019 16. (18)
  • 64 Zimba O, Radchenko O, Strilchuk L. Social media for research, education and practice in rheumatology. Rheumatol Int 2019
  • 65 LaBarge G, Broom M. Social Media in Primary Care. Mo Med 2019; 116 (02) 106-10
  • 66 Bittner JG, Logghe HJ, Kane ED, Goldberg RF, Alseidi A, Aggarwal R. et al. A Society of Gastrointestinal and Endoscopic Surgeons (SAGES) statement on closed social media (Facebook®) groups for clinical education and consultation: issues of informed consent, patient privacy, and surgeon protection. Surg Endosc 2019; 33 (01) 1-7
  • 67 Geis JR, Brady AP, Wu CC, Spencer J, Ranschaert E, Jaremko JL. et al. Ethics of Artificial Intelligence in Radiology: Summary of the Joint European and North American Multisociety Statement. Radiology 2019; Nov; 293 (02) 436-40
  • 68 Robillard JM, Cleland I, Hoey J, Nugent C. Ethical adoption: A new imperative in the development of technology for dementia. Alzheimers Dement 2018; 14 (09) 1104-13
  • 69 Chandawarkar AA, Gould DJ, Stevens WG. Insta-grated Plastic Surgery Residencies: The Rise of Social Media Use by Trainees and Responsible Guidelines for Use. Aesthet Surg J 2018; 38 (10) 1145-52
  • 70 Jaremko JL, Azar M, Bromwich R, Lum A, Alicia Cheong LH, Giber M. , et al. Canadian Association of Radiologists (CAR) Artificial Intelligence Working Group. Canadian Association of Radiologists White Paper on Ethical and Legal Issues Related to Artificial Intelligence in Radiology. Can Assoc Radiol J 2019; May; 70 (02) 107-118
  • 71 Reamer FG. Evolving standards of care in the age of cybertechnology. Behav Sci Law 2018; 36: 257-69
  • 72 Sussman N, DeJong SM. Ethical Considerations for Mental Health Clinicians Working with Adolescents in the Digital Age. Curr Psychiatry Rep 2018; 20 (12) 113
  • 73 Denecke K, Bamidis P, Bond C. et al. Ethical Issues of Social Media Usage in Healthcare. Yearb Med Inform 2015; 10 (01) 137-47
  • 74 Manzeschke A, Weber K, Rother E, Fangerau H. Ethical questions in the area of age appropriate assisting systems. Berlin: VDI/VDE publications; 2015
  • 75 Floridi L, Taddeo M. What is data ethics?. Phil Trans R Soc A 2016; 374: 20160360
  • 76 Cahan EM, Hernandez-Boussard T, Thadaney-Israni S, Rubin DL. Putting the data before the algorithm in big data addressing personalized healthcare. NPJ Digit Med 2019; Aug 19; 2: 78