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      SERIES: eHealth in primary care. Part 2: Exploring the ethical implications of its application in primary care practice

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          Abstract

          Background: eHealth promises to increase self-management and personalised medicine and improve cost-effectiveness in primary care. Paired with these promises are ethical implications, as eHealth will affect patients’ and primary care professionals’ (PCPs) experiences, values, norms, and relationships.

          Objectives: We argue what ethical implications related to the impact of eHealth on four vital aspects of primary care could (and should) be anticipated.

          Discussion: (1) EHealth influences dealing with predictive and diagnostic uncertainty. Machine-learning based clinical decision support systems offer (seemingly) objective, quantified, and personalised outcomes. However, they also introduce new loci of uncertainty and subjectivity. The decision-making process becomes opaque, and algorithms can be invalid, biased, or even discriminatory. This has implications for professional responsibilities and judgments, justice, autonomy, and trust. (2) EHealth affects the roles and responsibilities of patients because it can stimulate self-management and autonomy. However, autonomy can also be compromised, e.g. in cases of persuasive technologies and eHealth can increase existing health disparities. (3) The delegation of tasks to a network of technologies and stakeholders requires attention for responsibility gaps and new responsibilities. (4) The triangulate relationship: patient–eHealth–PCP requires a reconsideration of the role of human interaction and ‘humanness’ in primary care as well as of shaping Shared Decision Making.

          Conclusion: Our analysis is an essential first step towards setting up a dedicated ethics research agenda that should be examined in parallel to the development and implementation of eHealth. The ultimate goal is to inspire the development of practice-specific ethical recommendations.

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          Most cited references17

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          What is eHealth (6)? Development of a Conceptual Model for eHealth: Qualitative Study with Key Informants

          Background Despite rapid growth in eHealth research, there remains a lack of consistency in defining and using terms related to eHealth. More widely cited definitions provide broad understanding of eHealth but lack sufficient conceptual clarity to operationalize eHealth and enable its implementation in health care practice, research, education, and policy. Definitions that are more detailed are often context or discipline specific, limiting ease of translation of these definitions across the breadth of eHealth perspectives and situations. A conceptual model of eHealth that adequately captures its complexity and potential overlaps is required. This model must also be sufficiently detailed to enable eHealth operationalization and hypothesis testing. Objective This study aimed to develop a conceptual practice-based model of eHealth to support health professionals in applying eHealth to their particular professional or discipline contexts. Methods We conducted semistructured interviews with key informants (N=25) from organizations involved in health care delivery, research, education, practice, governance, and policy to explore their perspectives on and experiences with eHealth. We used purposeful sampling for maximum diversity. Interviews were coded and thematically analyzed for emergent domains. Results Thematic analyses revealed 3 prominent but overlapping domains of eHealth: (1) health in our hands (using eHealth technologies to monitor, track, and inform health), (2) interacting for health (using digital technologies to enable health communication among practitioners and between health professionals and clients or patients), and (3) data enabling health (collecting, managing, and using health data). These domains formed a model of eHealth that addresses the need for clear definitions and a taxonomy of eHealth while acknowledging the fluidity of this area and the strengths of initiatives that span multiple eHealth domains. Conclusions This model extends current understanding of eHealth by providing clearly defined domains of eHealth while highlighting the benefits of using digital technologies in ways that cross several domains. It provides the depth of perspectives and examples of eHealth use that are lacking in previous research. On the basis of this model, we suggest that eHealth initiatives that are most impactful would include elements from all 3 domains.
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            Self-Tracking for Health and the Quantified Self: Re-Articulating Autonomy, Solidarity, and Authenticity in an Age of Personalized Healthcare

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              Towards a Framework for Evaluating Mobile Mental Health Apps.

              Mobile phones are ubiquitous in society and owned by a majority of psychiatric patients, including those with severe mental illness. Their versatility as a platform can extend mental health services in the areas of communication, self-monitoring, self-management, diagnosis, and treatment. However, the efficacy and reliability of publicly available applications (apps) have yet to be demonstrated. Numerous articles have noted the need for rigorous evaluation of the efficacy and clinical utility of smartphone apps, which are largely unregulated. Professional clinical organizations do not provide guidelines for evaluating mobile apps.
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                Author and article information

                Journal
                Eur J Gen Pract
                Eur J Gen Pract
                IGEN
                igen20
                The European Journal of General Practice
                Taylor & Francis
                1381-4788
                1751-1402
                2020
                30 October 2019
                : 26
                : 1
                : 26-32
                Affiliations
                [a ]Julius Centre for Health Sciences and Primary Care, Department of Medical Humanities, University Medical Centre Utrecht , Utrecht, the Netherlands;
                [b ]Ethox and Wellcome Centre for Ethics and Humanities, Nuffield Department of Population Health, University of Oxford , Oxford, UK;
                [c ]Department of Public Health and Primary Care, Leiden University Medical Centre , Leiden, the Netherlands;
                [d ]National eHealth Living Lab (NELL) , Leiden, the Netherlands;
                [e ]Department of Medical Ethics and Health Law, Leiden University Medical Centre , Leiden, the Netherlands;
                [f ]Biomedical Data Sciences, Leiden University Medical Centre , Leiden, the Netherlands;
                [g ]Usher Institute of Population Health Sciences and Informatics, University of Edinburgh , Edinburgh, UK;
                [h ]Department of Clinical Pharmacy & Toxicology, Leiden University Medical Centre , Leiden, the Netherlands;
                [i ]Department of Nephrology, Leiden University Medical Centre , Leiden, the Netherlands
                Author notes
                CONTACT Sarah N. Boers s.n.boers@ 123456umcutrecht.nl Julius Centre for Health Sciences and Primary Care, Department of Medical Humanities, UMC Utrecht , Internal mail no Str. 6. 131, P.O. Box 85500, Utrecht, 3508 GA, the Netherlands
                Author information
                http://orcid.org/0000-0001-8135-6786
                http://orcid.org/0000-0001-8977-5344
                Article
                1678958
                10.1080/13814788.2019.1678958
                7034078
                31663394
                a13d4000-950d-41bd-a774-cc40fbe8e6e4
                © 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 12 April 2019
                : 30 September 2019
                : 07 October 2019
                Page count
                Figures: 0, Tables: 2, Pages: 7, Words: 4708
                Categories
                Opinion Paper

                Medicine
                ehealth,digital health,primary care,ethics,doctor–patient relationship
                Medicine
                ehealth, digital health, primary care, ethics, doctor–patient relationship

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