Sociotechnical Challenges of eHealth Technology for Patient Self-Management: A Systematic Review
SSociotechnical Challenges of eHealth Technology for PatientSelf-Management: A Systematic Review
Stefan Hochwarter Department of Computer Science, Norwegian University for Science and Technology, Trondheim, [email protected]
Keywords: eHealth, mHealth, welfare technology, assistive technology, collaboration, cooperative work, STS, review,challengesAbstract: Ageing of society and increase of time spent with chronic conditions challenge the traditional long-term caremodel. Assistive technology and eHealth are seen to play an important role when addressing these challenges.One prominent example are patient self-management systems. These systems not only transform the waypatients with chronic conditions interact with the healthcare system, but also change work practices of careproviders. This literature review addresses sociotechnical challenges of eHealth technologies with a strongcollaborative component. As a result, four themes are identified and discussed.
Population projections indicate a worldwide popula-tion ageing, with high-income countries leading thelist [UN, 2017]. This poses a challenge for the de-livery of healthcare services, both at a societal andeconomic dimension. The financial crisis in Europe(European debt crisis) since 2009 and the popula-tion ageing forces the countries to rethink their long-term care (LTC) policies [Swartz, 2013]. The rise oflife expectancy comes in hand with the increase ofdisability-adjusted life years (DALYs), whereas non-communicable diseases are leading the list [OECD,2017]. A shift in primary care for patients withchronic illnesses to address this demographic changeis proposed and the use of technology is seen as apowerful mean [Bodenheimer et al., 2002a, Boden-heimer et al., 2002b].Welfare Technology (WT), or assistive technol-ogy as commonly known outside Scandinavia, isone prominent example of such technology in (pri-mary) healthcare . The aim of WT is to in-crease the life quality and independence of peo-ple with physical, psychological or social impair-ments [Departementenes servicesenter, Informasjons-forvaltning, 2011]. The landscape of WT consists of awide range of different technologies, such as sensors, a https://orcid.org/0000-0003-2652-135X In this paper we stick to term Welfare Technology toavoid ambiguity.
Internet of Things (IoT) or GPS. Even though WT of-ten introduces and relies on innovative technical solu-tions, previous research in the field of WT states thatchallenges are only 20 % of technical and 80 % of or-ganizational nature [Helsedirektoratet, 2012]. Hence,the introduction of WT and in turn the digital trans-formation of healthcare raises challenges of socio-technical nature. This has also an effect on the workof care providers and the communication and collab-oration with their patients [Meskó et al., 2017].WT involves numerous types of actors which arehighly heterogeneous. Platforms are seen as an in-termediate between the use of ICT and societal out-comes. They also support communication across thedifferent users of the platform, each with their own,often very specific, requirements to the system. Whendesigning such a platform, the values and needs ofthese different actors need to be carefully consideredand taken into account [Ann Majchrzak et al., 2016].The platformization can also lead to a disruption ofexisting channels for communication between the par-ticipating actors of the platform. This can result touncertainty about where to find information or who isresponsible when new information occurs.The digital transformation also affects the workpractices of care providers. In some cases thiscould also mean the need to perform additional ordifferent work than before the introduction of e.g.WT solutions. New skills are developed by boththe care providers and receivers and different formsof communication challenge the traditional form of a r X i v : . [ c s . C Y ] F e b are [Grisot et al., 2018].These challenges are common themes withinthe field of Computer-Supported Cooperative Work(CSCW). The umbrella term CSCW was coined in1984 during a workshop by Irene Greif and Paul M.Cashman. The terms used to describe this field werenot strictly defined, also to allow broader discussionsand invite researchers from various fields to partici-pate. Schmidt and Bannon made an effort to describethose terms in more detail, looking at the meaningof CS (“computer-supported”) and CW (“cooperativework”). They argue that one first needs to understandthe underlying mechanisms and nature of cooperativework in order to design computer systems that sup-port cooperative work [Schmidt and Bannon, 1992].Two prominent challenges in the field of CSCW arecommon themes when implementing welfare tech-nology that changes the “traditional” way of work-ing in healthcare, namely the challenge of dispar-ity in work and benefit and disruption of social pro-cesses [Grudin, 1994].The aim of this study to investigate sociotechnicalchallenges of eHealth technology with a focus on itscollaborative nature. Welfare technology poses newchallenges to the healthcare system and the way workis organized around the patient, similar to the chal-lenges described in CSCW literature, as stated above.This is especially visible for patient self-monitoringand reporting, as it creates new ways of communica-tion and challenges the traditional division of work ofcare providers and receivers. As the eHealth landscape is rapidly changing, andnew eHealth solutions and national strategies ariseunder the umbrella of welfare technology, there is theneed for an updated review on the current challengesand opportunities. Even though there have been somesystematic literature reviews identified (see for exam-ple [Vassli and Farshchian, 2018]), no review wasfound to understand the collaborative nature of thisemerging, and indeed cooperative technology. Hence,concepts were chosen in accordance with the theme,choosing examples of welfare technology that have ahigh degree of collaboration.A systematic literature review was conducted infive steps to investigate the study objective to inves-tigate the sociotechnical challenges of eHealth tech-nology for patient self-management . The review wasdesigned according to Cruzes and Dyba [Cruzes andDyba, 2011]. In a first step a first unstructured searchto explore the field and get an understanding of com- mon terms and phrases in this field was conducted.Following, the objective was split up into three con-cepts, and for each concept similar terms were identi-fies (see Table 1).
Table 1: Mapping the objective to concepts.Concept 1 Concept 2 Concept 3motivation welfare technology self-monitoringpitfalls ehealth patient reportingchallenges mhealth remote monitoringtelemedicine self-management
Based on these concepts, papers for review wereidentified searching the Scopus database. Scopuswas selected as a primary source as it also includesrecords from the MEDLINE and EMBASE databases.A complete search history including the number offound and accessible papers can be seen in table 3.Accessible papers were selected based on predefinedinclusion and exclusion criteria (Table 2). In a nextsteps, duplicates where removed and an initial screen-ing to assess if the paper is relevant to this objective byreading the title and abstract, and evaluating the jour-nal type and research field. After reading the full-textversion of the articles identified in the first screening,the final selection of articles for the literature reviewwere selected (see figure 1).
Figure 1: The study selection process.
Finally, the selected articles were analyzed andconcepts were identified and mapped using the ref-erence management system Zotero with the extensionZotFile to extract annotations.
Table 2: Inclusion and exclusion criteria.original articles published in peer-reviewed journalarticles published in 2009 until 2019written in English, German or a Scandinavian languageno study protocolsable 3: The search history of the literature review.
Search Found AccessibleTITLE-ABS-KEY ( "welfare technology" self-monitoring ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 0 0TITLE-ABS-KEY ( "welfare technology" patient reporting ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 0 0TITLE-ABS-KEY ( "welfare technology" remote monitoring ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 1 0TITLE-ABS-KEY ( "welfare technology" self-management ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 0 0TITLE-ABS-KEY ( "welfare technology" motivation ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 1 1TITLE-ABS-KEY ( "welfare technology" pitfalls ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 0 0TITLE-ABS-KEY ( "welfare technology" challenges ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 6 5TITLE-ABS-KEY ( ehealth AND self-monitoring AND motivation ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 3 2TITLE-ABS-KEY ( ehealth AND self-monitoring AND pitfalls ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 0 0TITLE-ABS-KEY ( ehealth AND self-monitoring AND challenges ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 11 8TITLE-ABS-KEY ( ehealth AND patient AND reporting AND motivation ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 1 1TITLE-ABS-KEY ( ehealth AND patient AND reporting AND pitfalls ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 0 0TITLE-ABS-KEY ( ehealth AND patient AND reporting AND challenges ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 8 4TITLE-ABS-KEY ( ehealth AND remote AND monitoring AND motivation ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 2 0TITLE-ABS-KEY ( ehealth AND remote AND monitoring AND pitfalls ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 0 0TITLE-ABS-KEY ( ehealth AND remote AND monitoring AND challenges ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 17 8TITLE-ABS-KEY ( ehealth AND self-management AND motivation ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 14 8TITLE-ABS-KEY ( ehealth AND self-management AND pitfalls ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 0 0TITLE-ABS-KEY ( ehealth AND self-management AND challenges ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 21 12TITLE-ABS-KEY ( mhealth AND self-monitoring AND motivation ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 27 16TITLE-ABS-KEY ( mhealth AND self-monitoring AND pitfalls ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 0 0TITLE-ABS-KEY ( mhealth AND self-monitoring AND challenges ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 11 6TITLE-ABS-KEY ( mhealth AND patient AND reporting AND motivation ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 4 3TITLE-ABS-KEY ( mhealth AND patient AND reporting AND pitfalls ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 0 0TITLE-ABS-KEY ( mhealth AND patient AND reporting AND challenges ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 13 11TITLE-ABS-KEY ( mhealth AND remote AND monitoring AND motivation ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 3 1TITLE-ABS-KEY ( mhealth AND remote AND monitoring AND pitfalls ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 0 0TITLE-ABS-KEY ( mhealth AND remote AND monitoring AND challenges ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 24 15TITLE-ABS-KEY ( mhealth AND self-management AND motivation ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 19 10TITLE-ABS-KEY ( mhealth AND self-management AND pitfalls ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 1 1TITLE-ABS-KEY ( mhealth AND self-management AND challenges ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 35 22TITLE-ABS-KEY ( telemedicine AND self-monitoring AND motivation ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 25 14TITLE-ABS-KEY ( telemedicine AND self-monitoring AND pitfalls ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 1 1TITLE-ABS-KEY ( telemedicine AND self-monitoring AND challenges ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 28 18TITLE-ABS-KEY ( telemedicine AND patient AND reporting AND motivation ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 9 6TITLE-ABS-KEY ( telemedicine AND patient AND reporting AND pitfalls ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 0 0TITLE-ABS-KEY ( telemedicine AND patient AND reporting AND challenges ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 23 13TITLE-ABS-KEY ( telemedicine AND remote AND monitoring AND motivation ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 15 7TITLE-ABS-KEY ( telemedicine AND remote AND monitoring AND pitfalls ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 0 0TITLE-ABS-KEY ( telemedicine "remote monitoring" challenges ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 31 13TITLE-ABS-KEY ( telemedicine AND self-management AND motivation ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 49 32TITLE-ABS-KEY ( telemedicine AND self-management AND pitfalls ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 0 0TITLE-ABS-KEY ( telemedicine "self-management" challenges ) AND DOCTYPE ( ar ) AND PUBYEAR > 2008 40 29
RESULTS
Of the initial 443 records found, 18 articles were se-lected to be included in the literature review. From the181 accessible articles without duplicates, 159 wereexcluded mainly because they were not addressing thedefined study objective, they were purely focusing onthe effect of interventions, or were study protocols forfuture studies.Common themes related to the study objectivewere identified and mapped. The most commontheme was related to social pitfalls, followed by moti-vational and legal challenges. Figure 2 visualizes thedistribution of the themes. Table 4 describes the in-cluded papers, their subject of study and the themesidentified.
Figure 2: Identified themes related to study objective.
Social challenges and pitfalls are the most commontheme. The lack of social support for the patientswhen using self-management solutions is seen as amajor challenge by many articles. Solutions are re-ceived as impersonal and complicated by the end-users [Rollo et al., 2016, Hoaas et al., 2016]. Missingpersonal contact with the care personnel and hencethe absent of physical meetings are reported for long-term care of patients with chronic conditions. Ad-herence is suffering from this shortcomings [Hoaaset al., 2016, Moyano et al., 2019]. The lack of per-sonal contact and personal support is the most men-tioned challenge [Rollo et al., 2016, Hoaas et al.,2016, Rollo et al., 2016, Firet et al., 2019, Wake et al.,2016, Östlund et al., 2015]. Stand-alone interventionswithout personal support are reported to have low us-age and acceptance, especially with the older popula-tion or minorities [Wake et al., 2016].The role of relatives in a healthcare system thatis designed around medical conditions rather than the patient’s need is another factor for the use of self-management systems, and hence challenges the eq-uitable use and distribution of these systems [Slettebøet al., 2018]. For children, the role of the parent andtheir education level is crucial for receiving and effec-tively using self-management solutions [Henkemanset al., 2018].
Several articles explicitly mention legal barriers forthe use of welfare technology. The use of self-management systems challenges the responsibilitiesof the involved actors. This is reflected by the ques-tion of who is responsible in certain situations andhow much trust one can put into reports generatedby others through self-reporting systems [Legido-Quigley et al., 2014]. Further, the tension betweenfollowing the minimum legal requirements and theadditional care through digital health services chal-lenges the work of care professionals [Slettebø et al.,2018]. Generally, the lack of a legal framework orthe fragmentation of legal frameworks is consideredan issue when care providers implement and use wel-fare technology solutions [Martin et al., 2012, Sanerand van der Velde, 2016, Odnoletkova et al., 2016].Finally, legal issues related to privacy, information se-curity and the right to be forgotten hinder the diffusionof WT. These challenges are also linked to social pit-falls [Bossuyt et al., 2017, Odnoletkova et al., 2016].
Cultural differences influence the usefulness of differ-ent features of eHealth solutions. Different require-ments to the workflow and user interface are reported,based on different cultural background. Features thatare of use in one region might not be of use in an-other region, or culture so to speak [Dhillon et al.,2016]. The role of cultural practices, language bar-riers, and the clash of different professional culturesare stated as inhibited factors. Resistance against therole of co-creators arises out of these factors. Fur-ther, poor eHealth literacy is mentioned as a commonproblem linked to the user’s background [Rollo et al.,2016, Nilsen et al., 2016, Zibrik et al., 2015].
Finally, pitfalls related to motivational factors werementioned in three papers. The lack of motivation touse IT rather than poor IT skills is stated as a barrierfor patients [Early et al., 2017]. One paper mentionsthat the motivation of patients with chronic diseases able 4: Details of reviewed literature and identified themes.
Reference Subject of study Theme(s)[Bossuyt et al., 2017] disease management and monitoring for pa-tients with inflammatory bowel disease legal; social[Dhillon et al., 2016] patient-centered health management system cultural[Early et al., 2017] IT-based self-management of COPD coupledwith nurse-coach support social; motivational[Firet et al., 2019] eHealth with pelvic floor muscle training tosupport self-management of stress urinary in-continence social[Henkemans et al., 2018] pilot implementation of app for self-management social[Hoaas et al., 2016] exercise training at home, telemonitoring andself-management, weekly videoconferencingsessions social[Legido-Quigley et al., 2014] teleradiology across borders in the EuropeanUnion legal[Martin et al., 2012] adoption, readiness, and implementation oftelemedicine in rural hospitals and primarycare providers legal[Moyano et al., 2019] perception and acceptability of text messag-ing intervention for diabetes care social[Nilsen et al., 2016] case study of welfare technology describingresistance of implementation cultural[Odnoletkova et al., 2016] perception of tele-coaching in type 2 diabetes motivational; legal[Rollo et al., 2016] eHealth systems for supporting diabetes self-management cultural; social[Ross et al., 2018] self-management program for people withtype 2 diabetes motivational[Saner and van der Velde, 2016] eHealth and telemedicine challenges and op-portunities in cardiology services legal[Slettebø et al., 2018] ethical challenges perceived by leaders ofcommunity health services for older people legal; social[Wake et al., 2016] evaluation of national electronic personalhealth record and self-management platformfor people with diabetes social[Zibrik et al., 2015] uptake of eHealth for chronic disease self-management among immigrants and seniors cultural[Östlund et al., 2015] design of welfare technology solutions andaddressing the needs of its users - STS-inspired design socials the biggest issue to overcome when implementingself-management systems. [Odnoletkova et al., 2016].On the other side, lack of motivation is also reportedfor care providers who are unwilling to support thesystem by providing resources [Ross et al., 2018].
The objective of this paper was to investigate the so-ciotechnical challenges of eHealth technology for pa-tient self-management. Particularly of interest wasthe collaborative nature of eHealth technology, hencesystems for patient self-management were chosen asa good and timely case to investigate this objective.The major theme found in this literature review,is the one of social pitfalls. When designing and im-plementing welfare technology that disrupts existingchannels, it has strong social effects. Communicationand personal contact between the care providers andpatients are subject to change. The shift from careactivities from a well-defined and known (at least forthe healthcare professionals) environment affects theway care is delivered and experienced. The privatehomes of the patient play a central role and its percep-tion changes. Also, the way cooperative work is donein the healthcare sector receives an additional com-ponent to the already manifold system. Finally, theimportance of a peer-network (e.g. relatives, neigh-bors) is illustrated to ensure personal support. Infor-mal caregivers gain more attention and importance inthis setting.The lack of a legal framework is also mentionedrepeatedly as an obstacle to implement WT. In or-der to avoid additional work without compensation,or work where responsibilities are not clearly defined,a legal framework needs to be established. This alsoincludes GDPR (General Data Protection Regulation)and clear reimbursement systems. Leading the way inthe European north, Denmark has established a Digi-tal Health Strategy and an eHealth reference architec-ture.Further, it is essential to understand the usersand actors involved. The actors can generally notbe divided in homogenous groups, rather very het-erogenous groups that have distinctive characteristicswithin the group. Elderly patients often have morethan one disorder, and the management of comorbid-ity is in-turn very individual. This has also been un-derlined in articles reporting cultural challenges, andcalls for a holistic approach that takes this diversityinto account when designing WT systems.Finally, another common theme is the one of moti-vational challenges. For the care-receivers, in the role of co-creators, motivation can stagnate for chronicconditions where they should self-report even in theabsent of symptoms, and this in turn reminds the pa-tients that they are living with a chronic disease. Forcare providers, on the other hand, poor motivation canbe traced back to new work routines, new requiredskills, and lack of clearly established boundaries fortheir responsibilities (cf. legal challenges).The importance of addressing challenges of col-laboration can be seen throughout all four identifiedthemes and their descriptions, although most commonwithin the identified social challenges. The impli-cations of moving care into the home have been ad-dressed by many scholars in the field of CSCW. Thelack of personal contact and personal support, as de-scribed in section 3.1, can be a consequence of mov-ing care to a different setting. At home, the (invis-ible) work of relatives for healthcare plays a majorrole, while their work might not be recognized, or sys-tems and workflows were not designed with them inmind. At the same time, power relations change whenhealthcare worker visit the patients physically at theirhomes. So moving care to a new environment chal-lenges the traditional coordination of it [Fitzpatrickand Ellingsen, 2013].These challenges have been discussed in detail inthe field of CSCW, but it aims to go beyond barelydescribing the context at hand. It is a constructiveresearch domain, it is design oriented and aims to im-plement better CSCW systems [Schmidt and Bannon,1992]. To do so, one must first understand the do-main that shall be changed - in our case the coop-erative work systems to treat and manage long-termdiseases. As Welfare Technology is a rather new um-brella term, which though attracts much attention, theidentified challenges are of relevance for the design ofnew and improved solutions.
This paper focused on the sociotechnical challengesof eHealth technology, and it aims to support the un-derstanding of the complex systems involved. Hence,it can not cover all the aspects that are relevant. Thescope of this paper was on the system as a whole, in-cluding all actors involved and using self-monitoringor self-management systems as a proxy for systemswith high collaborative nature. This is still a verybroad perspective, and this makes it easy to miss im-portant details. Future research is recommended tolook at a specific group of actors (e.g. patients, policy-makers, nurses), at a specific condition (e.g. asthma,dementia) or systems using technologies with uniqueharacteristics (e.g. fall detectors, medicine dis-pensers). Further, I encourage researchers to becomeactive and uncover what works and what doesn’t byusing for example action design research or participa-tory design.This work has several limitations, mainly due toits scope. First, it uses strict inclusion and exclusioncriteria. Only peer-reviewed journal articles are in-cluded. To have access to more recent and up-to-datefindings, conference papers can further be of interest.Also, only one database was used to retrieve our arti-cles (Scopus). Including other databases which covera different audience would increase the range of cov-ered topics and perspectives.Finally, to fully understand this complex and fast-moving field, a different approach, such as a realistreview, might bring up more insight into this field.
ACKNOWLEDGEMENTS
I would like to thank Babak A. Farshchian and ElenaParmiggiani for their constructive feedback. Further,I’d like to thank the three anonymous reviewers fortheir input that helped to improve this paper.
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