Personalized Health Care in a Data-Driven Era: A Post–COVID-19 Retrospective

Abstract

In this retrospective commentary, we present the “worldview”1Healthcare in 2020 and Beyond. 2020.https://www.mckinsey.com/∼/media/McKinsey/Industries/Healthcare%20Systems%20and%20Services/Our%20Insights/Healthcare%20in%202020%20and%20beyond/Healthcare-in-2020-and-beyond.pdfDate accessed: November 9, 2020Google Scholar,2Checkland P. Systems Thinking, Systems Practice: Includes a 30-Year Retrospective.1 ed. Wiley, 1999Google Scholar of 43 health care stakeholders (across the roles of patients, health care practitioners, health policy researchers, payors, policymakers, health care providers, and technology vendors) with diverse experiences and expertise. This was obtained in the course of our ongoing field investigations on the personalized health care as a service (PHCaaS) design. As a research methodology, we adopted a branch of system thinking known as Soft System Methodology 3, a consistent variant of design science research.3Vaishnavi V.K. Kuechler Jr., W. Design Science Research Methods and Patterns. CRC Press, Boca Roton, FL2015Crossref Google Scholar,4Peffers K. Tuunanen T. Rothenberger M.A. Chatterjee S. A design science research methodology for information systems research.J Manag Inform Syst. 2007; 24: 45-77https://doi.org/10.2753/MIS0742-1222240302Crossref Scopus (4055) Google Scholar Because Soft System Methodology 3 requires a comprehensive understanding of the given “problematic situation” in need of a solution, a systematic literature review to obtain a contextual understanding of contemporary PHCaaS served as a starting point.5Watson R.T. Webster J. Analysing the past to prepare for the future: writing a literature review a roadmap for release 2.0.J Decis Syst. 2020; 29: 129-147https://doi.org/10.1080/12460125.2020.1798591Crossref Scopus (54) Google Scholar Specifically, an extensive background review of emerging information technologies6Zahid A. Poulsen J.K. Sharma R. Wingreen S.C. A systematic review of emerging information technologies for sustainable data-centric health-care.Int J Med Inform. 2021; 149104420https://doi.org/10.1016/j.ijmedinf.2021.104420Crossref PubMed Scopus (16) Google Scholar and an extensive review of system design principles and rules for PHCaaS7Zahid A. Sharma R. Wingreen S. Inthiran A. Soft systems modelling of design artefacts for blockchain-enabled precision healthcare as a service.in: 22nd International Conference on Electronic Business. Vol. 22. ICEB, 2022: 451-467https://aisel.aisnet.org/iceb2022/42Google Scholar were examined to design a feasible ecosystem. Refinement of design specification and validation of the design were achieved through design refinement interviews and a design validation workshop, respectively.8Kotzé P. van der Merwe A. Gerber A. Design Science Research as Research Approach in Doctoral Studies. AIS Electronic Library, 2015https://researchspace.csir.co.za/dspace/handle/10204/8497Date accessed: May 8, 2022Google Scholar,9Van der Merwe A. Gerber A. Smuts H. Mapping a design science research cycle to the postgraduate research report.in: Liebenberg J. Gruner S. ICT Education. SACLA 2017. Communications in Computer and Information Science. 2017: 293-308https://doi.org/10.1007/978-3-319-69670-6_21Crossref Scopus (2) Google Scholar Here, participating health care stakeholders (known as informants in the parlance of grounded theory research) shared their viewpoints, experience, and informed insights about PHCaaS. An open call for participation was emailed to the members of Health Informatics New Zealand (www.hinz.org.nz) and the Health Informatics Forum (www.healthinformaticsforum.com), strictly adhering to the principle of informed participation. Because the field study was conducted during the pandemic, interactions were mainly through online interviews and focus group workshops, which were purposed to distill and incorporate participants’ viewpoints with diversified digital health care experience and expertise. The Table lists participating health care stakeholders or informants included in this commentary (Supplemental Table, available online at https://www.mcpdigitalhealth.org/). A thematic semantic analysis10Braun V. Clarke V. Using thematic analysis in psychology.Qual Res Psychol. 2006; 3: 77-101https://doi.org/10.1191/1478088706qp063oaCrossref Scopus (77407) Google Scholar of their concerns and expectations using NVivo11NVivo. Lumivero. Published 2023.https://lumivero.com/products/nvivo/Date accessed: March 5, 2023Google Scholar as an information-mining tool suggests that patient-centric, personalized health care (PHC) incorporating interoperability standards, dynamic consent management, and state-of-the-art data privacy and security measures can potentially offer transparent, portable, and scalable health care services, addressing the gap in current practices. Figure 1 is a word-cloud of systematic semantic analysis, generated by NVivo using text from transcriptions of design refinement interviews. It is clear that interoperability, sustainability, accountability, individualization, and implementation are “top of mind” concerns that informants have in their worldviews of PHCaaS,TableList of Participating Health Care StakeholdersInformant No.Stakeholder typeAffiliationPositionYears of experience in digital healthCountrySpecialization1PolicymakerCloudspotter ConsultancyConsultant10+United KingdomStrategic planning, project ideation, stakeholder consultation, policy advocacy2PolicymakerMercy Public Hospitals IncChief health information services manager10+AustraliaStrategic planning, stakeholder consultation3PolicymakerThe PressSenior health reporter10+United KingdomProject ideation, health policy advocacy4PolicymakerDirectorate General of Health ServicesDirector general10+BangladeshStrategic planning, project ideation, stakeholder advisory, policy advocacy5Health policy researcherInstitute of Environmental Science and Research, New ZealandScientist7New ZealandBioinformatics, patient-centric health care design6Health policy researcherSchool of Public Health, University of SydneyPostdoctoral researcher10+AustraliaPublic health, digital mental health, health services research7Health policy researcherCentre for Public Health Data and Policy, Australian National UniversityResearch fellow10+AustraliaPublic health, patient-centric health care design, health system research, implementation science8Health policy researcherCentre for Primary Health Care and Equity, University of New South WalesPhD researcher10+AustraliaPublic health, population health, digital health9Health policy researcherAuckland District Health Board (ADHB)Analyst10+New ZealandHealth informatics, social media in health care, EHR/EMR, digital health10Health policy researcherMYOBERP support analyst2ChinaNew Zealand health care, blockchain, precision health care, health informatics11Health care practitionerDoc Cure Health Tech LimitedGeneral physician8BangladeshTelehealth, e-health12Health care practitionerDoc Cure Health Tech LimitedGeneral physician4BangladeshTelehealth, e-health13Health care practitionerDepartment of Internal Medicine, William Osler Health Centre, Brampton Civic HospitalSpecialized physician10+CanadaInternal medicine, rheumatology, e-health14Health care practitionerCanterbury District Health Board (CDHB)Community nurse9New ZealandMental health, community health, telehealth, m-health15Health care practitionerCDHBRegistered nurse10+New ZealandMental health, community health, telehealth, m-health16Health care practitionerCDHBHealth care assistant5New ZealandPrimary care, mental health, e-mental health, digital health17Health care practitionerCDHBMental Health assistant5New ZealandPrimary care, mental health, e-mental health, digital health18Health care practitionerCDHBHealth care assistant2New ZealandDentistry, mental health, e-health, EHR/EMR19Health care practitionerCDHBEnrolled nurse10+New ZealandMental health, e-mental health, community health digital health20Health care practitionerCDHBEnrolled nurse10+New ZealandMental health, e-mental health, forensic health, digital health21Health care practitionerCDHBRegistered nurse10+New ZealandMental health, e-mental health, community health digital health22Technology vendorLifePlus Bangladesh (Powered by Labaid)Product designer4BangladeshUI UX designer, digital health23Technology vendorLifePlus Bangladesh (Powered by Labaid)Software engineer3BangladeshBackend developer, e-health24Technology vendorLifePlus Bangladesh (Powered by Labaid)Software quality assurance engineer2BangladeshSoftware quality assurance, digital health25Technology vendorWestwing www.westwing.deSoftware frontend engineer II5GermanyFull-stack development, digital health26Technology vendorPlexureSenior software engineer2New ZealandHealth navigation systems, health information system developer27Technology vendorBrain Station 23Head—strategic business unit3BangladeshBiomedical engineering, health informatics, blockchain28Technology vendorZTE CorporationCore network (cloud) engineer4New ZealandHealth informatics, EHR/EMR, digital health29Health care providerLifePlus Bangladesh (Powered by Labaid)Assistant general manager (marketing and business development)8BangladeshHealth care marketing and business development, digital health30Health care providerLabaid Cancer Hospital & Super Speciality CenterDeputy manager6BangladeshHealth care resource management, e-health31Health care providerLifePlus Bangladesh (Powered by Labaid)Product development analyst8BangladeshHealth care business analytics, e-health32Health care providerMySoft LimitedAssistant manager (business development)4BangladeshHealth care marketing and business development, digital health33Health care providerADHBMedical administrator5New ZealandHealth informatics, EHR/EMR, digital healt.34Health care providerADHBData administrator10+New ZealandHealth informatics, EHR/EMR, digital health35PatientDepartment of Philosophy, University of CanterburyPhD researcher10+New ZealandExperienced e-health user36Patient—Homemaker7New ZealandExperienced e-health user37PatientUniversity of CanterburyIS tutor and researcher5New ZealandM-health, telehealth, health applications38Patient—Self-employed business owner4New ZealandM-health, telehealth, health applications39PatientMinistry for Primary IndustriesPrinciple financial analyst6∗∗New ZealandM-health, telehealth, health applications40PatientRadio EktaraAudio engineer8New ZealandM-health, telehealth, health applications41PayorADHBACC administrator8New ZealandHealth claims analysis, EHR/EMR, digital health42PayorADHBACC coordinator10+New ZealandHealth claims analysis, EHR/EMR, digital health43PayorADHBACC administrator4New ZealandHealth claims analysis, EHR/EMR, digital healthEHR, electronic health record; EMR, electronic medical record. Open table in a new tab EHR, electronic health record; EMR, electronic medical record. Building on electronic health records (EHRs) or electronic medical records, health care providers now demand robust application programming interfaces that provide utilities for data interoperability and availability in a context-sensitive manner. They also demand data privacy by design and privacy by default in system development and operations. Over time, health care providers have learned the importance of routine system security updates and their potential to reduce malpractices such as identity theft, data breaches, and cyberattacks.12Vijay J.A. Kumar C.D.P. Gomathi B. Secure and privacy-aware intelligent healthcare systems: a review.in: Chakraborty C. Khosravi M.R. Intelligent Healthcare: Infrastructure, Algorithms and Management. Springer Nature, 2022: 215-239https://doi.org/10.1007/978-981-16-8150-9_10Crossref Google Scholar They have also learned how patient-controlled EHRs can encourage patient engagement, opt-in, active participation, and transparency in health care service delivery. Active bench-learning from other industries, such as banking,13Dvorak K. Healthcare should learn from banking industry on cybersecurity.https://www.fiercehealthcare.com/it/healthcare-needs-lessons-from-banking-industry-cybersecurityDate accessed: March 25, 2023Google Scholar retail,14Kam R. 8 lessons learned from retail breaches.https://www.healthcareitnews.com/news/8-lessons-learned-retail-breachesDate accessed: March 25, 2023Google Scholar and insurance,15Talesh S.A. Data Breach, privacy, and cyber insurance: how insurance companies act as “compliance managers” for businesses.Law Soc Inq. 2018; 43: 417-440https://doi.org/10.1111/lsi.12303Crossref Scopus (38) Google Scholar have enabled health care providers to benefit from best practices and lessons learned on applying emerging technologies to achieve secure and effective data sharing. Providers have also adopted digitally enabled and internationally recognized performance evaluation standards to assess treatment efficacy and improve service quality over the usage cycle. On user-centricity, the providers now prefer simple, intuitive augmented reality (AR) interfaces6Zahid A. Poulsen J.K. Sharma R. Wingreen S.C. A systematic review of emerging information technologies for sustainable data-centric health-care.Int J Med Inform. 2021; 149104420https://doi.org/10.1016/j.ijmedinf.2021.104420Crossref PubMed Scopus (16) Google Scholar,16Bhugaonkar K. Bhugaonkar R. Masne N. The trend of metaverse and augmented and virtual reality extending to the healthcare system.Cureus. 2022; 14e29071https://doi.org/10.7759/cureus.29071Crossref Google Scholar,17Quqandi E. Joy M. Drumm I. Rushton M. Augmented reality in supporting healthcare and nursing independent learning: narrative review.Comput Inform Nurs. Published online April 24, 2022; https://doi.org/10.1097/CIN.0000000000000910Crossref Scopus (1) Google Scholar to fulfill patients’ emotional, clinical, and practical needs. One key takeaway from the COVID-19 pandemic for health care providers is the potential of remote monitoring with biosensor devices in delivering PHC. During the same period, health policy researchers observed a significant escalation in digital health service usage.18Alkhalifah J.M. Seddiq W. Alshehri B.F. Alhaluli A.H. Alessa M.M. Alsulais N.M. The role of the COVID-19 pandemic in expediting digital health-care transformation: Saudi Arabia’s experience.Inform Med Unlocked. 2022; 33101097https://doi.org/10.1016/j.imu.2022.101097Crossref PubMed Scopus (4) Google Scholar, 19Sindhu S. Digital health care services in post COVID-19 scenario: modeling the enabling factors.Int J Pharm Healthc Mark. 2022; 16: 412-428https://doi.org/10.1108/IJPHM-04-2021-0046Crossref Scopus (1) Google Scholar, 20Jennifer Z. Aziz S. Eyal Z. Bates D.W. Transforming care and outcomes with digital health through and beyond the pandemic.NEJM Catalyst. Published online May 31, 2022; https://catalyst.nejm.org/doi/full/10.1056/CAT.22.0053Date accessed: January 31, 2023Google Scholar This digital health engagement trend emerged as the key enabler for revamping existing health information ecosystems and needs to be prolonged to enable optimal data usage in health care delivery. Scholars and policymakers also understand that digitally enabled, user-centric health care service design is a key success factor in the emerging era of data-driven PHC. Patients expect user-centric (empathic), simple, intuitive, and customizable digital health service design with ubiquitous, assignable access privileges. They appreciate the current practice of multifactor authentication mechanisms for user verification, data privacy, and security, because these design considerations are central to a trustworthy digital health ecosystem. Research on the effect of emerging technologies such as artificial intelligence (AI), internet of things (IoT), big data, blockchain, and the metaverse on PHCaaS has attracted increasing attention from these stakeholders. For instance, blockchain characteristics such as decentralization, tamper-resistance, traceability, and immutability are potential to the following: (1) provide secure and accountable health data sharing, (2) improve the data privacy and for and reduce the health care C. J. technology in a systematic PubMed Scopus Google Scholar, technologies for and health care Med Inform 24: PubMed Scopus Google Scholar, P. J. technology in in Google Scholar as a and potentially improve virtual medical and health care stakeholders by effective health data to in of metaverse service to healthcare a J Res Public 2022; Scopus Google Scholar, A. of metaverse for intelligent 2022; PubMed Scopus Google Scholar, A. N. and on a Med Unlocked. 2022; Scopus Google Scholar to PHC. Digital health researchers significant of and with and big of cyber such as and data in health care systems, have to a of existing health data policy patients’ over data sharing. also demand in the existing in digital health because current practices information in of policy and research has a interoperability for effective health data interoperability, which is also a key to system field research that health care that the interoperability and of EHRs are to be the key of data in the data-driven health care ecosystem. They support the practice of patient-controlled data usage because patient and and transparency in system data security, privacy and trustworthy health a about with contemporary health care practitioners, with and for The trend of of emerging information technologies contemporary health care has to of J. E. A. and medical artificial a study in the field of PubMed Scopus (1) Google P. W. S. and of and intelligent in and medical resource 2022; PubMed Scopus Google Scholar or K. a to the Health of A of the Research of Medicine, accessed: March 5, 2023Google A. S. of the and the of Published online 2022; PubMed Google Scholar have using to by at the of a systematic PubMed Scopus Google J.A. of by patient PubMed Scopus Google Scholar and now the of T. of a for medical data J Med Inform. PubMed Scopus Google C. need a now and digital J. Published online November accessed: March 9, 2023Google Scholar such as A. E. of obtained from a online artificial intelligence PubMed Scopus Google Scholar An of as medical service be in the In the current digital of health care, is to health care that such is and be PHCaaS provide data support to health care and provide efficacy in health care services and delivery. It be to health care with requires and data standards, and to patient treatment and delivery. data support this from health and medical in to patient-centric for treatment in and in the of in the health care As a health care are that enabling of the potentially a health practice that their roles in In the PHCaaS understand the of personalized digital health services and their potential to improve health care experience, and The COVID-19 pandemic health care demand and and to the of treatment of N. S. J. B. of COVID-19 pandemic on healthcare J. 2021; PubMed Google Scholar, T. by healthcare during the COVID-19 a from Public 2021; accessed: March Scopus Google Scholar, A. S. of pandemic on health J Med 2020; PubMed Scopus Google Scholar They have the importance of EHRs and the in health care It has to a for and personalized digital health services for in health of PHCaaS demand a user experience with access to their health They expect data-centric other health care are also about health data privacy and They data privacy and security mechanisms in system and health care service delivery. They support the practice of and security and system updates to understand the need to data quality standards to with data interoperability the stakeholders. For to or of EHRs and that their data are secure and the PHCaaS is and this with the of health care providers, technology also the need to and health care performance and demand the of in health care health data privacy and security, support the of security such as in to data They that health data interoperability in is a to the of standards the same have that and health care data as with the of health care researchers and practitioners, technology a interoperability for data health care stakeholders. Digital health policymakers the importance of privacy and security in of health care data cycle analysis, and to patient They and using patients’ health care data with consent to transparency in digital health practices. or policymakers these biosensor and their usage should be in patient-centric information potentially patient engagement in policymakers that be to health data at an extensive which is significant for health care and In our field A. Sharma R. Wingreen S. Inthiran A. Soft systems modelling of design artefacts for blockchain-enabled precision healthcare as a service.in: 22nd International Conference on Electronic Business. Vol. 22. ICEB, 2022: 451-467https://aisel.aisnet.org/iceb2022/42Google Scholar a of design that health care stakeholders for PHCaaS. Figure this of needs by health care stakeholders and the to be services in a contemporary data-driven On the of these insights from the we that user-centric incorporating interoperability standards, dynamic consent management, and state-of-the-art data privacy and security measures can potentially offer a transparent, and scalable health care such health care services should in with health care stakeholders with to their experience and in health care service delivery. Digital health stakeholders have such as or by and providers to technologies such as and using digital of these are in design sustainability, accountability, individualization, and are of emerging personalized digital health care services that potentially improve the current efficacy of digital to and stakeholders with and in a health care contemporary health care a of J. E. A. and medical artificial a study in the field of PubMed Scopus (1) Google P. W. S. and of and intelligent in and medical resource 2022; PubMed Scopus Google Scholar or K. a to the Health of A of the Research of Medicine, accessed: March 5, 2023Google A. S. of the and the of Published online 2022; PubMed Google Scholar the and of such that support and sustainable PHCaaS are a key policy for development for health care that is and the In for digital health to to such a the informed support of policymakers is for of other stakeholders through workshops, and The of with digital health stakeholders about a a and in data and of digital health user and in emerging digital health services and in user practices in digital health systems be in supporting sustainable health A key of PHCaaS is that the of big data to in of medicine, in which significant be and by medical and the of such insights we data-driven are also open a of such as with and such with measures such as or in this commentary the importance of medical in delivering a best served by informed and to by policymakers, researchers, health care providers, and the Figure 3 the for sustainable PHCaaS. In such a user-centric and health care providers be for Specifically, consent to information to and for treatment and using these and provide and to and improve the In in such an the quality and of patient data are The in health care by Published accessed: 2020Google Scholar 3 in the of current Specifically, data-driven digital health are key to best practices and standards of has in health care the the of these existing requires the of other emerging information technologies for the security, and of such PHCaaS. with S. A to artificial intelligence and how care should the health care Board 2022; PubMed Scopus Google Scholar worldviews as a health care we that health care this to the of such as EHRs or electronic medical records, augmented technologies such as and digital and secure with contemporary health care patient engagement, and offer data-driven health care for the of the same technology providers and researchers to the of that to stakeholders the efficacy of PHCaaS. The have of to The the of health care for their informed consent to in the field study their during the COVID-19 are also to the and for their and with Table

Topics & Concepts