Balancing Health Information Exchange and Privacy Governance from a Patient-Centred Connected Health and Telehealth Perspective

Summary Objectives: Connected healthcare is an essential part of patient-centred care delivery. Technology such as telehealth is a critical part of connected healthcare. However, exchanging health information brings the risk of privacy issues. To better manage privacy risks we first need to understand the different patterns of patient-centred care in order to tailor solutions to address privacy risks. Methods: Drawing upon published literature, we develop a business model to enable patient-centred care via telehealth. The model identifies three patient-centred connected health patterns. We then use the patterns to analyse potential privacy risks and possible solutions from different types of telehealth delivery. Results: Connected healthcare raises the risk of unwarranted access to health data and related invasion of privacy. However, the risk and extent of privacy issues differ according to the pattern of patient-centred care delivery and the type of particular challenge as they enable the highest degree of connectivity and thus the greatest potential for privacy breaches. Conclusion: Privacy issues are a major concern in telehealth systems and patients, providers, and administrators need to be aware of these privacy issues and have guidance on how to manage them. This paper integrates patient-centred connected health care, telehealth, and privacy risks to provide an understanding of how risks vary across different patterns of patient-centred connected health and different types of telehealth delivery.

[1]  N. Marzuki,et al.  Health Information , 2021, Encyclopedia of Education and Information Technologies.

[2]  M. Isomursu,et al.  The Extent and Coverage of Current Knowledge of Connected Health: Systematic Mapping Study , 2019, Journal of medical Internet research.

[3]  A. Coronato ISO 14971: medical devices - application of risk management to medical devices , 2018 .

[4]  M. Karunanithi,et al.  User Experience of an Innovative Mobile Health Program to Assist in Insulin Dose Adjustment: Outcomes of a Proof-Of-Concept Trial. , 2017, Telemedicine journal and e-health : the official journal of the American Telemedicine Association.

[5]  Daniel J. Vreeman,et al.  Reconciling disparate information in continuity of care documents: Piloting a system to consolidate structured clinical documents , 2017, J. Biomed. Informatics.

[6]  A. Lai,et al.  Present and Future Trends in Consumer Health Informatics and Patient-Generated Health Data , 2017, Yearbook of Medical Informatics.

[7]  Noel Carroll,et al.  Software engineering for connected health (journal first session) , 2017, ICSSP.

[8]  Tsipi Heart,et al.  A review of PHR, EMR and EHR integration: A more personalized healthcare and public health policy , 2017 .

[9]  U. Iqbal,et al.  Sharing sensitive health information through social media in the Arab world , 2016, International journal for quality in health care : journal of the International Society for Quality in Health Care.

[10]  S. Grzybowski,et al.  Telehealth and patient-doctor relationships in rural and remote communities. , 2016, Canadian family physician Medecin de famille canadien.

[11]  Noel Carroll,et al.  Key Success Factors for Smart and Connected Health Software Solutions , 2016, Computer.

[12]  Sara E. Champlin,et al.  Health Literacy and Health Information Technology Adoption: The Potential for a New Digital Divide , 2016, Journal of medical Internet research.

[13]  P. Perrotta,et al.  Validating Laboratory Results in Electronic Health Records: A College of American Pathologists Q-Probes Study. , 2016, Archives of pathology & laboratory medicine.

[14]  G. Hartvigsen,et al.  Unintended Consequences of Tele Health and their Possible Solutions , 2016, Yearbook of Medical Informatics.

[15]  Martin Spraggon,et al.  A structuration framework for bridging the macro–micro divide in health‐care governance , 2016, Health expectations : an international journal of public participation in health care and health policy.

[16]  Afina W Lemstra,et al.  Evaluation of the Digital Alzheimer Center: Testing Usability and Usefulness of an Online Portal for Patients with Dementia and Their Carers , 2016, JMIR research protocols.

[17]  Li Yang,et al.  Securing a Connected Mobile System for Healthcare , 2016, 2016 IEEE 17th International Symposium on High Assurance Systems Engineering (HASE).

[18]  Beatrice Podtschaske,et al.  Engaging patients through open notes: an evaluation using mixed methods , 2016, BMJ Open.

[19]  Craig Kuziemsky,et al.  Decision-making in healthcare as a complex adaptive system , 2016, Healthcare management forum.

[20]  James B. D. Joshi,et al.  Anytime, anywhere access to secure, privacy-aware healthcare services: Issues, approaches and challenges , 2015 .

[21]  Martha Fuller,et al.  Implementation of the Integrated Electronic Patient Portal in the Pediatric Population: A Systematic Review. , 2015, Telemedicine journal and e-health : the official journal of the American Telemedicine Association.

[22]  M Househ,et al.  Ethical Issues of Social Media Usage in Healthcare , 2015, Yearbook of Medical Informatics.

[23]  Craig E. Kuziemsky,et al.  Review of Social and Organizational Issues in Health Information Technology , 2015, Healthcare informatics research.

[24]  Michael McDonald,et al.  eHealth, Participatory Medicine, and Ethical Care: A Focus Group Study of Patients’ and Health Care Providers’ Use of Health-Related Internet Information , 2015, Journal of medical Internet research.

[25]  Clemens Scott Kruse,et al.  Patient and Provider Attitudes Toward the Use of Patient Portals for the Management of Chronic Disease: A Systematic Review , 2015, Journal of medical Internet research.

[26]  Jyotishman Pathak,et al.  Evaluating the Process of Online Health Information Searching: A Qualitative Approach to Exploring Consumer Perspectives , 2014, Journal of medical Internet research.

[27]  J. Kvedar,et al.  Connected health: a review of technologies and strategies to improve patient care with telemedicine and telehealth. , 2014, Health affairs.

[28]  Sharon A. Johnson,et al.  Patient-centered care requires a patient-oriented workflow model. , 2013, Journal of the American Medical Informatics Association : JAMIA.

[29]  Gilad J. Kuperman,et al.  Potential Unintended Consequences of Health Information Exchange , 2013, Journal of General Internal Medicine.

[30]  Jens H. Weber,et al.  Software engineering in health care: Is it really different? And how to gain impact , 2013, 2013 5th International Workshop on Software Engineering in Health Care (SEHC).

[31]  Vimla L. Patel,et al.  Considering complexity in healthcare systems , 2011, J. Biomed. Informatics.

[32]  Toni Robertson,et al.  Physical space and information space: studies of collaboration in distributed multi-disciplinary medical team meetings , 2011, Behav. Inf. Technol..

[33]  S. Grimes ANSI/AAMI/IEC 80001-1:2010; Application of risk management for IT Networks incorporating medical devices - Part 1: Roles, responsibilities and activities , 2010 .

[34]  D. Berwick What 'patient-centered' should mean: confessions of an extremist. , 2009, Health affairs.

[35]  K. Oberle,et al.  Ethics in Telehealth Nursing Practice , 2008 .

[36]  M. Gagnon,et al.  Implementing telehealth to support medical practice in rural/remote regions: what are the conditions for success? , 2006, Implementation science : IS.

[37]  J Lyle Bootman,et al.  Value in health care. , 2006, Managed care interface.

[38]  George Demiris,et al.  Ethical Considerations for the Utilization of Telehealth Technologies in Home and Hospice Care by the Nursing Profession , 2006, Nursing administration quarterly.

[39]  Jean Gayton Carroll,et al.  Crossing the Quality Chasm: A New Health System for the 21st Century , 2002 .

[40]  B. Chisholm The expanding concept of public health. , 1960, American journal of public health and the nation's health.

[41]  Mowafa Said Househ,et al.  Exploring the Concepts of Privacy and the Sharing of Sensitive Health Information , 2014, ICIMTH.

[42]  Tobias Mettler,et al.  European Conference on Information Systems ( ECIS ) 5-2-2012 WHAT IS THE BUSINESS MODEL BEHIND E-HEALTH ? A PATTERN-BASED APPROACH TO SUSTAINABLE PROFIT , 2013 .

[43]  Mowafa Said Househ,et al.  Re-examining Perceptions on Healthcare Privacy - Moving from a Punitive Model to an Awareness Model , 2012, HEALTHINF.

[44]  Mowafa Said Househ,et al.  Sharing Sensitive Personal Health Information through Facebook: the Unintended Consequences , 2011, MIE.

[45]  N. C. Andreasen Brave New Brain: Conquering Mental Illness in the , 2001 .