A transformed health ecosystem is a multi-stakeholder coalition that collects, stores, and shares personal health information (PHI) for different purposes, such as for personalized care, prevention, health prediction, precise medicine, personal health management, and public health purposes. Those services are data driven, and a lot of PHI is needed not only from received care and treatments, but also from a person's normal life. Collecting, processing, storing, and sharing of the huge amount of sensitive PHI in the ecosystem cause many security, privacy, and trust challenges to be solved. The authors have studied those challenges from different perspectives using existing literature and found that current security and privacy solutions are insufficient, and for the user it is difficult to know whom to trust, and how much. Furthermore, in today's widely used privacy approaches, such as privacy as choice or control and belief or perception based trust does not work in digital health ecosystems. The authors state that it is necessary to redefine the way privacy and trust are understood in health, to develop new legislation to support new privacy and approaches, and to force the stakeholders of the health ecosystem to make their privacy and trust practices and features of their information systems available. The authors have also studied some candidate solutions for security, privacy, and trust to be used in future health ecosystems.

1st Faculty of Medicine Charles University Prague Czechia

eHealth Competence Center Bavaria Deggendorf Institute of Technology Deggendorf Germany

Faculty of Information Technology and Communication Sciences Tampere University Tampere Finland

Medical Faculty University of Regensburg Regensburg Germany

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Pravettoni G, Triberti S.

Ruotsalainen P, Blobel B. Digital pHealth – problems and solutions for ethics trust and privacy. PubMed DOI

FDA.

Ronquillo Y, Meyrs A, Korvek SJ.

WHO.

Moss RJ, Sule A, Kohl S. eHealth and mHealth. PubMed DOI PMC

Eysenbach G. What is e-health? PubMed DOI PMC

The National Institutes of Health (NIH).

Ginsburg GS, Phillips KA. Precision medicine: from science to value. PubMed DOI PMC

Prosperi M, Min JS, Bian J, Modave F. Big data hurdles in precision medicine and precision public health. PubMed DOI PMC

Gorini A, Caiani EG, Pravettoni G.

Rose C. Ubiquitous smartphones, Zero Privacy. DOI

Wei Z, Zhao B, Su J.

Santarossa S, Kane D, Senn CY, Woodruff SJ. Exploring the role of in-person components for online health behavior change interventions: can a digital person-to-person component suffice? PubMed DOI PMC

Connoly R, McParland C. Dataveillance in the workplace: moving beyond divergent perspectives, chapter 19 in handbook of research on strategic communication, leadership, and conflict management in modern organizations. In: Normore A, Hills D, Javidi M, Long L. editors. DOI

Joyce KE.

Iyawa GE, Marlien Herselman M, Adele Botha A.

Vimarlund V, Mettler T. Introduction to the Ecosystem for Two-sided Markets, Barriers and Facilitators. In: Vimarlund V. editor.

Rubinstein IS.

Rubenfield J.

Ruotsalainen P, Blobel B. Health information systems in the digital health ecosystem—problems and solutions for ethics, trust and privacy. PubMed DOI PMC

Taviani HT, Moore JH. Privacy protection, control of information, and privacy-enhancing technologies. DOI

International Organization for Standardization.

Marguilis ST. Three theories of privacy: an overview. In: Trepete S, Reinecke L. editors.

Waldman AE. DOI

Nissenbaum H.

Sokolovska A. DOI

ENISA.

Toch E, Birman Y. DOI

Lilien L, Bhargava B. Trading privacy for trust in online interactions. In: Jøsang A, Ismail R, Boyd C. editors.

Liu X, Datta A, Lim E-P.

Evans BJ. Power to the people: data citizens in the age of precision medicine. PubMed PMC

Doyle J. Rational decision making. In: Robin W, Frank K. editors.

Frizzo-Barker J, Peter A, Chow-White PA, Charters A, Ha D. DOI

Sanchini V, Marelli L. Chapter 10, data protection and ethical issues. In: Pravettoni G, Triberti S. editors.

Ren K, Wang C, Wang Q.

Yu K-H, Beam AL, Kohane IS. Artificial intelligence in healthcare. PubMed DOI

Bruynseels K, Santoni de Sio F, van den Hoven J. Digital twins in health care: ethical implications of an emerging engineering paradigm. PubMed DOI PMC

President’s Council of Advisors on Science and Technology, Report to the President.

Coiera E, Clarke R. e-Consent: the design and implementation of consumer consent mechanisms in an electronic environment. PubMed DOI PMC

IEEE.

Fatokun T, Avishek Nag A, Sharma S. Towards a blockchain assisted patient owned system for electronic health records. DOI

Dubovitskaya A, Baig F, Xu Z, Shukla R, Zambani PS, Swaminathan A, et al. ACTION-ehr:patient-centric blockchain-based electronic health record data management for cancer care. PubMed DOI PMC

Chen L, Yang J, Wang Q, Niu Y. A framework for privacy-preserving healthcare data sharing. In:

International Organisation for Standardisation.

Damianou N, Dulay N, Lupu E, Sloman M.

Blobel B, Nordberg R, Davis M, Pharow P. Modelling privilege management and access control. PubMed DOI

Blobel B, Davis M, Ruotsalainen P. Policy management standards enabling trustworthy pHealth. PubMed

International Organisation for Standardisation.

Balkin JM.

Dobkin A. Information fiduciaries in practice: data privacy and user expectations. DOI

Ritter J, Mayer A.

Lederer S, Dey AK, Mankoff J.

Roehrs A, da Costa CA, da Rosa Righi R. OmniPHR: a distributed architecture model to integrate personal health records. PubMed DOI

Solove DJ. The end of privacy? PubMed

Ruotsalainen P, Blobel B. Privacy s dead – solutions for privacy-enabled collections and use of personal health information in digital era. PubMed DOI

A System Model and Requirements for Transformation to Human-Centric Digital Health

Designing and Managing Advanced, Intelligent and Ethical Health and Social Care Ecosystems

Reinforcing Health Data Sharing through Data Democratization