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Information technology and hospice palliative care:social, cultural, ethical and technical implications in arural setting
Craig Kuziemsky1, Heather Jewers2, Brenda Appleby3, Neil Foshay4, WendyMaccaull5, Keith Miller5 & Madonna Macdonald6
1Telfer School of Management, University of Ottawa, Ottawa, ON, Canada, 2School of Nursing,3Department of Religious Studies, 4Schwartz School of Business and Information Systems and5Department of Mathematics Statistics and Computer Science, St Francis Xavier University,Antigonish, NS, Canada and 6VP Community Health, Guysborough Antigonish Strait HealthAuthority, Antigonish, NS, Canada
AbstractObjective: There is a need to better understand the specific settings in which health informationtechnology (HIT) is used and implemented. Factors that will determine the successfulimplementation of HIT are context-specific and often reside not at the technical level but rather atthe process and people level. This paper provides the results of a needs assessment for HIT tosupport hospice palliative care (HPC) delivery in rural settings.Methods: Roundtable discussions using the nominal group technique were done to identify priorityissues regarding HIT usage to support rural HPC delivery. Qualitative content analysis was thenused to identify sociotechnical themes from the roundtable data.Results: Twenty priority issues were identified at the roundtable session. Content analysis grouped thepriority issues into one central theme and five supporting themes to form a sociotechnical frameworkfor patient-centered care in rural settings.Conclusion: There are several sociotechnical themes and associated issues that need to be consideredprior to implementing HIT in rural HPC settings. Proactive evaluation of these issues can enhance HITimplementation and also help to make ethical aspects of HIT design more explicit.
Keywords: Health information technology, patient-centered care, palliative care, rural care delivery,systems design, evaluation, sociotechnical
1. Introduction
Although health information technology (HIT) has the potential to enhance the provisionof healthcare delivery, HIT implementation is difficult as it represents the intersection oftwo complex entities (information technology and healthcare). The literature reportsnumerous examples of HIT implementation failures as a consequence of developingsystems based on faulty assumptions, problematic models of care and poorly articulateduser needs [1,2].
Correspondence: Craig Kuziemsky, Telfer School of Management, University of Ottawa, 55 LaurierAvenue East, Ottawa, ON, Canada K1N 6N5. Tel: +1 6135625800 ext. 4792. E-mail: [email protected]
Informatics for Health and Social Care, January 2012; 37(1): 37–50Copyright © Informa UK LtdISSN 1753-8157 print/ISSN 1753-8165 onlineDOI: 10.3109/17538157.2011.613553
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As technology and the domains it must support becomemore complex it puts increasedemphasis on the need for comprehensive HIT evaluation. To date, there is a wide body ofresearch on HIT evaluation. DeLone and McLean’s [3] information systems success modelhas been adapted for healthcare IT to evaluate factors such as system functionality and per-formance, user satisfaction and quality and productivity of healthcare delivery. Evaluationmethods such as usability testing [4] have enhanced our ability to evaluate specific HIT fea-tures such as interfaces and search tools. Similarly, human–computer interaction (HCI)has raised our awareness to factors such as meaningful use and social aspects of HCIthat allow us to better design systems that meet user’s needs [5]. However, two shortcom-ings of existing evaluation methods are: (1) they usually take place post-implementationand (2) they predominately focus on the technology itself. The first shortcoming, identifi-cation of issues post-implementation, can be problematic as it may be too late to addressthe issues. Rather we need to use formative evaluation that assesses HIT before, during andpost-implementation [6]. The second shortcoming, focus on technology, is a key challengeas cultural, organizational, work process and other contextual issues are often deemed outof scope of HIT evaluation frameworks [7]. However, we cannot ignore cultural, organiz-ational and other out-of-scope factors because they are often what determine thesuccess or failure of HIT implementations. For example, in their evaluation of computer-ized physician order entry (CPOE) systems, Ash and colleagues identified a number of un-intended consequences that impacted the effectiveness of the CPOE systems. Theunintended consequences included workflow issues, unexpected changes in power struc-tures, negative emotions among users and poor alignment with usual communication pat-terns [8]. It is essential to point out that the CPOE systems functioned as required, meaningthey facilitated order entry, and thus were successful from a functional or usability perspec-tive. The direct interaction of the user with the CPOE system was not the fundamentalproblem but rather it was broader contextual issues beyond the system such as communi-cation, work process and social issues that were the problem. Given the importance ofthese contextual issues, we must design evaluation measures that assess factors beyondthe technology and encompass the broader social, ethical and technical environmentswhere HIT will be used.
Digitization or digitally enabled refers to the replacement of physical processes withinformation and electronic media [9]. As stated earlier, in order to understand theimpact of digitization on healthcare delivery, it is essential that we understand howpeople and technology interact. A 2011 paper identified that the key issues in electronichealth record implementation are not technical but rather the need to design technologyfrom a ‘bottom-up’ perspective that emphasizes clinical needs and the definition of abusiness case for how technology will aid in supporting strategic directions for healthcarereform [10]. Another 2011 paper presented an agenda for social-care informatics thatemphasized holistic healthcare delivery [11]. Of course calls for attention to social infor-matics factors are not necessarily new. The sociotechnical approach is a long-standingapproach to systems development that suggests that technical and social factors beafforded equal weight when introducing technology into an organization. With the socio-technical approach, the goal is to optimize the relationship between the technical systemand the social system [2]. This approach has been described as a way to understand thecomplicated nature of healthcare delivery in order to describe how people interact withIT in different settings [2]. However, a shortcoming with the sociotechnical approach isthat it is largely theoretical. Although many studies present HIT evaluation as sociotechni-cal by describing various aspects of how people and technology interact, there is alack of defined criteria to operationalize the sociotechnical approach for the design andevaluation of HIT.
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Studies have also described the need for increased incorporation of ethical principles inHIT evaluation [12,13]. However, incorporating ethical principles into HIT evaluation issimilarly challenging as they are often discussed abstractly, and thus it is not clear howto contextualize these principles for HIT evaluation. Overall, studies are needed to articu-late specific sociotechnical and ethical aspects to allow them to be incorporated into HITdesign and evaluation.
Hospice palliative care (HPC) is a domain of health care that addresses the physical,psychological, social and spiritual needs of individuals with chronic or terminal illness[14]. The goal of HPC is to reduce suffering and improve quality of life. The aging ofCanada’s population and the fact that patients with chronic illnesses now survive forlonger periods will greatly increase the need for HPC in the forthcoming years. Thereare a number of settings where HPC may be administered including hospitals, assistedcare facilities, hospices and patient residences [15]. Developing HIT applications tosupport HPC delivery is one way of facilitating the provision of quality HPC services toa growing population of patients [16]. However, to achieve successful HIT implemen-tation, we first need to ensure that the social, ethical and clinical needs of the HPC com-munity are taken into consideration and explicitly addressed during HIT implementation.Studies on telehealth usage in palliative care have identified benefits to HPC delivery fromtelehealth applications including self-symptom assessment, education and training,improved collaboration among caregivers through video case conferencing, more effec-tive care delivery, cost avoidance and better utilization of caregiver time [17–19].However, these studies have also identified several issues that impede the everyday useof telehealth including integration into routine practice, logistical issues, ethical issuesand the need for new skill sets and training [17]. Similarly, Whitten et al. [20] showedthat the contrast between HPC culture, which promotes human touch and personalizedcare delivery and technology, which is perceived as impersonal and generalizable, was asignificant barrier to telehealth usage in HPC. Finally, HPC applications must beemployed in a context where patients and their families are experiencing high degreesof stress [21,22].
Overall we see two key shortcomings in existing research on HIT to support HPC. First isthat much of it has designed very specific telehealth systems such as for painmanagement,education or team consultations [17,23,24]. These systems are often designed in isolationfrom other systems so it is difficult to assess their true viability in the context of the broaderenvironments where they are used [17]. As HIT usage becomes more common, we need toevaluate technology usage for the support of day-to-day care provision across the overallcontinuum of care, rather than only evaluating technology for specific tasks such as symp-toms management or consultations. Second, as the need for HPC services increases, moreservices will need to be provided outside of hospitals in community, residential and ruralsettings. Rural-care delivery is more challenging because issues such as cross-jurisdic-tional policy integration, lack of common data sharing agreements and technological limit-ations are more prominent. These issues could provide barriers to care delivery as studieshave shown that differences exist in the level of healthcare services between urban andrural settings [25].
Therefore, we need research that defines an agenda for the design and evaluation of HITapplications for HPC from a ‘bottom-up’ and patient-centered perspective. We also needto identify the barriers to HIT usage to support community and rural-based care deliveryand more importantly, how to overcome these barriers. To date, there is little research thathas identified a social informatics agenda for designing and evaluating HIT for day-to-dayHPC delivery across the continuum of care. Further, studies of the specific issues aroundHIT needs in rural settings are almost nonexistent.
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HPC is an ideal area to study sociotechnical informatics given the patient/family-cen-tered focus of HPC delivery and the multidisciplinary nature of how it is provided. HPCis also suitable for studying ethical issues of HIT usage as ethical principles are a keypart of HPC delivery as described by the Canadian Hospice Palliative Care Association’s(CHPCA) Model to Guide Hospice Palliative Care Based on National Principles andNorms of Practice [14]. According to the CHPCA, all HPC activities should be guided bythe ethical principles of ‘autonomy, beneficience, nonmaleficence, justice, truth telling,and confidentiality’ [14]. We suggest that the aforementioned ethical principles be incor-porated into the design and evaluation of HIT to support HPC.
The results in this paper address the above two key shortcomings in HIT research: (1)the need to articulate sociotechnical and ethical considerations for HIT design and evalu-ation to support ‘bottom-up’ and patient-centered systems design and (2) the need toidentify issues relevant to HIT design and evaluation to support healthcare delivery inrural settings. There are two parts to our findings. First, we report on a roundtablesession that identified specific issues related to developing HIT to support rural HPC de-livery. Second, we analyzed the roundtable data and developed a sociotechnical frame-work for HIT design to support patient-centered care in rural settings. The frameworkidentifies specific issues that provide visibility to sociotechnical and ethical aspects forHIT design to support rural healthcare delivery.
2. Materials and methods
2.1 Data sourcesThe study participants were delegates attending a May 2008 workshop in Nova Scotia,Canada, on Technology and palliative care: Social, cultural, ethical, and technical impli-cations in a rural setting. Participants included clinicians (e.g. physicians, nurses),researchers and/or policy- and decision-makers, both in HPC and health informatics.The participants were all involved in rural-care delivery either in research, policy and plan-ning roles, or in direct care delivery. Some patient/family representatives and palliative-carevolunteers were also in attendance, although the majority of participants were from the caredelivery end. A total of 41 participants attended theworkshop. Research ethics approval wasreceived from the St Francis Xavier University Research Ethics Board and the GuysboroughAntigonish Strait Health Authority (GASHA) Research Ethics Review Committee prior to thestudy. All workshop participants consented to take part in the study.
2.2 MethodRoundtable discussions were held to (1) provide insight into social, cultural and ethicalissues confronted within the scope of palliative care and information technology in arural setting and (2) prioritize the issues and suggest possible strategies for addressingthe issues. Roundtable discussion using the nominal group technique [26] was used toencourage participation while protecting the anonymity of the participants. Participantswere grouped at tables. There were between six and eight participants at each table witha mixture of clinicians, researchers and policy-makers at each table. The nominal grouptechnique involves four phases [27]. The first phase is the ‘generating ideas’ phase; herethe moderator explained the procedure and participants were then asked to share theirexperiences with their fellow table members about social, cultural and ethical issueswithin the scope of palliative care and information technology in a rural setting. Thesecond phase is the ‘recording’ phase; here each table’s members engaged in discussionwith the responses from each table recorded on index cards by a research assistant. Phasethree is the ‘evaluation’ phase; here each table’s ideas were reported to the larger group by
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the research assistant. Similar issues were then combined and a master list of HITimplementation issues was derived. The last phase is the aggregate phase; here each par-ticipant had three colored tags corresponding to first, second and third place, respectively;they put each colored tag onto a flipchart corresponding to their perspective on the priorityof an issue. The votes for each issue were tabulated and the top three priority issues wereidentified. A group discussion was then held to discuss the issues and identify strategies toovercome them.
After the workshop, we analyzed the data using qualitative content analysis, a methodused to analyze text data. Data analysis using content analysis is focussed on the charac-teristics of the data with particular attention to the content or contextual meaning of thetext [28].
3. Results
3.1 Identifying the priorities: priority issues identified regarding the use of HIT in palliativecare in a rural settingTwenty unique issues related to using HIT in a rural HPC setting were identified during theevaluation phase of the workshop. The 20 issues are listed below.
1. What drives the HIT design and implementation agenda and how do we ensure tech-nology is not the end but rather the means of achieving quality care delivery?
2. Although it may be beneficial, modern technology is expensive.3. There are still rural areas that do not have high-speed wireless service/access.4. As care delivery moves across healthcare regions, there is the issue of dealing with
more than one agency, which brings issues of data consistency and data sharing/access.
5. How towe ensurewe have the appropriate resources (e.g. Human, Finance) to supportservice delivery?
6. Cost – is this the best way to spend money given other healthcare needs (i.e. need forbeds, more staffing)?
7. How de we incorporate information management to prevent issues such as dupli-cation of information?
8. Balancing technical ability with challenges of the practice/environment and needs ofthe client.
9. There is still a lack of methods to conduct financial assessment that ties technologyusage to enhanced healthcare delivery.
10. How do we ensure that applications are usable by all people given that there arevarying levels of literacy?
11. Communications limitations exist and peoplewill have varying degrees of access to cellphones, Internet and computers.
12. Assuring privacy and confidentiality of information that is collected and used.13. Respite is a common need for caregivers; can we leverage technology to help
provide it?14. Given the person-centered nature of HPC, how do we provide flexibility and unique-
ness through an information system that is developed based on standards?15. How do we ensure technology is accepted by the user/patient?16. How do we define and deliver the level of training required by users?17. Given resource constraints how can we ensure there will be appropriate management
support for training given other service delivery priorities?18. We need to ensure there is 24/7 technical support (especially in rural areas).
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19. Evaluation of the system – Is it giving what it is supposed to give?20. How do we overcome resistance to change?
As the above list shows, a wide variety of issues emerged including: technical, financial,workflow, information management, organizational management and sociobehavioralissues. This illustrates the breadth of concerns that users have about HIT usage.
3.2 Top three priority issues and strategies to overcome themIn the aggregate phase, a vote was taken on the 20 issues to identify the top three priorityissues. The three priority issues are described below.
1. What drives the HIT design and implementation agenda and how dowe ensure tech-nology is not the end but rather the means of quality of care?
The participants emphasized that a fundamental question that must be asked about anyHIT project is what is driving the implementation agenda? The agenda provides a firstimpression for users and there will be resistance if the agenda is perceived as being HITimplementation for the sake of state-of-the-art technology rather than enhanced health-care delivery. Moreover, if the agenda is not focussed on tangible patient and providerbenefits, then the HIT project is doomed to failure. An agenda for HIT to support ruralHPC must be based upon supporting patient/family-centered care and providing thebest quality of life for palliative patients and their families, as those are the basic tenetsof HPC.
Strategies to overcome the agenda issue included the need to educate all stakeholdersthat HIT is a means of supporting an agenda of quality patient/family-centered care.Further, the HIT development and implementation agenda must be informed by consen-sus statements and standards about HPC such as the 2002 CHPCA Norms of Practice [14].Similar HPC standards exist in other countries. HIT must be viewed first and foremost asthe means to achieving quality patient care.
2. Communication limitations and prevention of information duplicationThis priority issue encompasses issues 7 and 11. HIT applications are often designed usingstate-of-the-art technology, which can be very different from the technical infrastructure inthe real-world setting where it will be used. In rural settings, basic cell phone and broad-band Internet access are not always reliable or even available. HIT must be developedbased upon a technology platform that will function in a variety of different operationalenvironments. For example, HIT applications in a rural setting must be able to operatein an ‘online’ synchronous mode where client computers can communicate with centralservers and in an ‘offline’ mode where client computers are not connected to a centralserver. The ‘offline’ mode is necessary to ensure that HIT applications will still workwithout Internet access so that data can be collected and stored to be synchronized witha server once Internet connection is available. This ensures that technical capabilitydoes not drive care delivery.
HIT must be also be built with a vision of an integrated communication system includ-ing a common model of the communication and data needs and the incorporation of datastandards to ensure that data are shareable across different settings. Requiring providers tocollect the same data across different settings wastes valuable provider time and is taxingfor patients and families. Healthcare systems must be designed and integrated as intero-perable systems so that data can be collected once and used many times across all caresettings.
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Strategies to overcome communication technology challenges included lobbying thegovernment and telecommunication companies to ensure that sufficient technology infra-structure exists in both urban and rural locations. Governments and health authorities alsoneed to develop and implement a common model for communication and data sharing.
3. Balancing technical ability with challenges of the practice/environment and needsof the client
A concern among workshop participants was the impact that HIT would have on the de-livery of patient care. HIT is neither a panacea that will solve all the data and communi-cation problems that exist nor should it be an impediment to quality healthcaredelivery. The reality is HIT falls somewhere in between those two extremes but the vari-ations in user perceptions that exist about HIT points to the need to clearly define therole that HIT will play in care delivery. A key part of that definition is defining the limit-ations of what technology can do. One size fits all training is not appropriate as someusers will need more training than others and may require specific training in functionssuch as drop-down menus. However attention to such details is crucial as Kushniruket al. [29] showed how usability issues such as mouse clicks and drop-down menus canbe the precursor to medical errors.
Several strategies to help balance technical challenges with practice realities were eli-cited. These included defining upfront what technology will and will not achieve, deter-mining the requirements of the persons who will be using the technology andincorporating them into the HIT design, and ensuring support frommanagement for com-prehensive training of all staff and the involvement of staff in the selection, design andevaluation of the HIT. Upfront definitions of the role and limitations of HIT will help toproperly set the expectations of HIT stakeholders regarding what the technology canand cannot do. The requirements of the persons who will be using the technology needto be elicited and incorporated into the HIT design so that the HIT supports their workand does not present barriers. Support frommanagement in order to provide comprehen-sive training and to facilitate the involvement of staff in the selection, design and evaluationof HIT was another suggestion. The participants believed that these strategies would helpto provide staff with a sense of ownership of the HIT and would help to ensure that theneeds of users will be addressed by the technology. These strategies could also increasethe likelihood that the technology will be embraced when implemented and may alsohelp to mitigate potential problems, such as disrupted work flow through identificationof contextual realities in the healthcare environment where the HIT will be used.
3.3 Analysis of roundtable findings: sociotechnical framework for HIT design to supportpatient centered care in rural settingsAlthough the three priority issues were discussed in detail during the workshop, limitedtime prevented the discussion of the other issues. However, this does not mean theother issues are any less important and in fact different issues will emerge as priorityissues in different contexts. Therefore, we sought to create a generic framework thatwould incorporate all the priority issues from Section 3.1. To achieve that goal, we analyzedthe data using qualitative content analysis. A qualitative analytical approach was desiredbecause the data were very rich with insight into sociotechnical issues related to HITusage in rural settings. There were two main objectives we wanted to achieve from thedata analysis. The first was to further analyze the priority issues to identify a sociotechnicalframework for HIT design and evaluation to support rural HPC delivery. The second was toarticulate ethical aspects of HIT usage in rural HPC settings.
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The data analysis process involved taking the transcript data from the roundtablesession and looking for patterns and trends among the 20 priority issues. As we conductedthe analysis, we realized that there were common themes among the issues. The last stageof the analysis involved consolidating the patterns and trends into themes. From the analy-sis, it became apparent that that central theme was patient-centered care in rural settings.Regardless of whether the issue was technical, organizational or financial, the commonissue was the desire to provide the best care possible for patients and their families. Fiveother predominant themes emerged that we have designated as supporting themes.These five themes are: management, technological, political, human and social andhealth systems.
After the fives supporting themes were identified, five of the authors (C.K., H.J., N.F.,B.A. andW.M.) independently placed each priority issue from Section 3.1 under a support-ing theme. An issue could be put into more than one theme. We then used consensus toestablish the final groupings of themes and issues. Any issue that received amajority of thevotes (i.e. at least three of five votes) was grouped as part of a theme. Table 1 shows thesociotechnical framework consisting of the central theme of patient-centered care inrural settings plus the five supporting themes with the consensus grouped priorityissues from Section 3.1.
The sociotechnical themes and underlying issues represent a sociotechnical frameworkfor HIT design to support patient-centered care in rural settings. The themes we identifiedare consistent with other sociotechnical studies of HIT such as [2,30]. However, our frame-work extends existing sociotechnical research in twoways. First, we have identified specificissues within each theme to support HIT design and development. Second, we have ident-ified that many of the issues are not mutually exclusive but rather they are hybrid issuesthat cut across multiple themes. For example issue #1 (what drives the HIT design andimplementation agenda) is both a management and a political issue. Issues 2, 4, 5 and20 are also hybrid issues. The impact of these hybrid issues on HIT design and evaluationwill be multi-faceted and will require solutions that address all issues.
Each of the supporting themes and their associated issues is described below from theperspective of HIT design and evaluation. Where applicable we also describe how theissues provide visibility to ethical implications of HIT design and evaluation.
3.3.1 ManagementHPC providers already operate on a tight time schedule and cannot be expected to learnhow to use HIT applications within their current work routines. In addition, some HPCproviders, particularly in rural areas where HIT has not been implemented, are not tech-nologically savvy and may be reluctant to use HIT because of feelings of inadequacy. Eventhose who have experience with HIT will require education, access to training and techno-logical help, particularly during the implementation phase.
Table I. Sociotechnical framework for HIT design to support patient-centered care in rural settings.
Central theme: patient-centered care in a rural setting
Supporting theme Priority issues (numbers from Section 3.1)
Management 1, 4, 5, 6, 9, 17, 19, 20Technological 2, 3, 11, 12, 14, 18Political 1, 2, 4, 5, 6Human and social 8, 10, 13, 15, 16, 20Health systems 4, 7, 13
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Management support is necessary to give providers time to be adequately trained onHIT applications. Further, as care delivery and the HIT to support that care deliverybecome more complex, more detailed training and support will be required. Learningon the job is not an option. Management also needs to ensure that HPC providers are in-volved in the design, implementation and evaluation of HIT to ensure they add value forclinicians. Management must also ensure that they do not use HIT for purposes other thanthat which it was designed and implemented. For example, as data become electronic, it iseasier to track how data are collected for patient assessments and other clinical processes.That can allow management to monitor clinical staff and potentially apply punitivemeasures if protocols are not followed. Such practices violate the ethical principle oftruth telling when staff is not openly told about such monitoring.
3.3.2 TechnologicalAlthough the technology used in day-to-day healthcare delivery has advanced signifi-cantly, many HIT studies take place in prototype or ideal settings using state-of-the-arttechnology and software. The reality is that basic cell phone and broadband Internetaccess is still limited in many rural areas. Further, software applications may not be themost current version. Such limitations must be overcome before we can think about wide-spread HIT usage in rural areas. HIT built upon an assumption of broadband Internetaccess will look much different if used via dial-up telephone modem. There would benothing more inefficient and frustrating for a physician or nurse doing a home visit tolose his/her signal part way through an assessment or to be unable to access data entryforms or information for decision-making at the point of care. As identified by the work-shop participants, an important priority will be to balance technological capabilitieswith the challenges of the practice environment and the needs of the patient/family.HIT must support a patient/family-centered approach that considers the patient’s experi-ence of the illness and provides the means to capture their wishes, goals, plans and hopes.HPC providers cannot be expected to struggle with technical issues while trying to providecare in a stressful setting. Although improved access to information can be beneficial, thereare also risks to privacy and confidentiality. HITmust be developed and implemented withsafeguards to support and protect the ethical principle of confidentiality, defined as ‘theprotection and control of information privy to persons’ [10], and the principle of auton-omy, which means that the patient has the right to decide who will have access to his/her information.
3.3.3 PoliticalHIT support for rural HPC delivery comes with a cost and there will certainly be peoplewho will question whether those dollars could better be spent elsewhere given hospitalbed shortages and long wait lists for services. But if HIT is shown to enhance rural HPCdelivery, then we must make a strong case for why these dollars would be well spent.The ethical principle of justice, which is defined as ‘the fair treatment of all individuals,without discrimination or prejudice’ [14] also requires that measures are taken toaddress the disparities in access to technological resources in rural areas when comparedwith urban settings. That includes lobbying for government support to ensure that ruralHPC clients have the same advantages as urban ones.
A further political challenge is getting a long-term commitment to projects. Politicalcommitments are often only valid until the next election, which can result in progressbeing halted suddenly and the wasting of resources when the government changes anda new healthcare agenda is brought forth. Designing and implementing complex health-care systems are long journeys and governments need to recognize and commit to
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seeing those journeys reach their destinations. We must also ensure HIT is not selected forthe wrong reason. Balka et al. [31] described how HIT applications have sometimes beenselected because of political influence and cost savings through joint procurement ratherthan selecting the best HIT for a particular setting. This type of practice ignores the con-textual nature of HIT usage and is likely to lead to ineffectiveness and ultimately to in-creased costs both financially and also in terms of human suffering.
3.3.4 Human and socialIn our quest for efficiency and effectiveness, we sometimes forget that healthcare is aboutpeople. HPC is by nature a high touch person-centered approach to care delivery. We needto consider the ethical principle of beneficence that mandates ‘the provision of benefitsand the balancing of harms and benefits for the purpose of doing the most good’ [14]and the principle of nonmaleficence that holds us responsible to avoid ‘doing harm’[14]. Delivering HPC in rural settings is challenging enough and we must make certainthat technology does not add more difficulty and no benefits. We also need to ensurethat HIT applications do not harm or cause distress to healthcare providers. One of the un-intended consequences of CPOE systems was stress-related emotions from end-users [8],which emphasized the need to consider the well being of providers. Our quest to deliverquality patient care cannot come at the expense of those who provide care.
3.3.5 Healthcare systemIn the past, healthcare systems and care delivery within these systems have largely workedin silos. As patients are cared for by teams and by providers across multiple settings, theneed for information sharing to prevent duplication of data entry and to facilitate effectivecare delivery become crucial. The silo era needs to be replaced by an era of collaboration,communication and information sharing to support safe, compassionate, competent,ethical care and to ensure justice by making the best use of resources. Basing HITdesign around patient/family issues and needs instead of designing systems based onthe care setting or the healthcare provider can help to mitigate inefficiencies and wastethat are a consequence of silos of care. Embedding easy access to practice guidelinesand HPC expertise within HIT can also help to improve use of scientific evidence fordecision-making and care delivery and more judicious use of scarce resources.
4. Discussion
As HIT applications become increasingly central to healthcare delivery, we must enhanceour ability to take into consideration the wide range of sociotechnical issues that canimpact HIT implementation. This paper described a sociotechnical framework for HITdesign to support patient/family-centered palliative care in rural settings. The frameworkconsists of one central and five supporting themes and issues that articulated sociotechni-cal aspects of HIT design and in some instances provided visibility to ethical aspects of HITusage. Such visibility can help to incorporate ethical principles into HIT design and evalu-ation to ensure the use of HIT does not create burden or interfere with the traditionalhealthcare values of equity, humanity and patient-centered care.
Despite the lack of attention to cultural, organizational and other contextual issues inHIT evaluation frameworks, our research findings showed that these issues are in factvery relevant to the people who use or interact with HIT. The design and evaluation ofHIT is complex and needs to include many factors that extend beyond the technologyitself. Technical, financial, change management, communication infrastructure, politicalagendas and the ability to share information across disparate settings were just some of
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the issues that participants raised in a roundtable session. Our workshop participantsidentified the agenda for HIT implementation, communication limitations, and theneed to balance technical issues with clinical practice as the top three priority issues.That is not to imply that the other issues are any less important but rather quite the con-trary. Our generic sociotechnical framework in Table I contains all the priority issues fromSection 3.1. The identification of key priority issues is context-specific and will differ fromsetting to setting. Once priority issues are identified, they can be articulated out into issuesand solutions to address the issues using the approach that we illustrated in Section 3.2.The key message from the findings is that digitization will fail if it is done without due con-sideration of the underlying people and processes that interact with technology.
To overcome the above challenges, we suggest that evaluation of HIT to support rural-care delivery must start long before the technology is actually designed. Rather thandesigning HIT applications and then evaluating the failure we must take Berg’s adviceand be proactive in evaluation to prevent failure [32]. A well-defined patient-centeredagenda must be developed and the technological capabilities of where HIT will beused must be evaluated prior to any HIT design. There is little point in developing state-of-the-art HIT that will not be usable in real-care settings because of technologicalshortcomings, user dissatisfaction or lack of governmental cooperation.
The findings from this paper can contribute to the design and evaluation of HIT tosupport patient-centered care delivery in rural settings. The sociotechnical frameworkand specific issues within the framework can serve as a meta-model for the design andevaluation of HIT. Although numerous studies have advocated the need for a sociotechni-cal approach to HIT design, sociotechnical factors need to be articulated and engineeredlike any systems design component. We provided an example of how to view technologicalimplementation through the lens of a domain specific framework (i.e. bottom-up) by dis-cussing technological concerns in the context of the Norms of Practice by the CanadianHospice Palliative Care Association. We also identified that some of the sociotechnicalissues are hybrid issues that cross multiple themes. The management of these hybridissues will be more complex and developing solutions to overcome the issues willrequire collaborative efforts across political, technical and health systems domains.
The central theme of patient-centered care in a rural setting has some unique systemdesign challenges because many of the issues we identified are more complex in rural set-tings. First, the technological infrastructure can vary greatly across rural settings, whichmake systems integration more difficult. Second, rural settings are often geographicallylarge and can span multiple health service or political jurisdictions. This can introducecompeting political or strategic policies. Third, while respect for patient privacy remainsthe foundation of trust and integrity in therapeutic relationships, rural professionalsmay share cultural norms, values and social networks with other professionals and theirpatients. Commonly, healthcare providers may also be relatives or friends and neighborsof both patients and fellow professionals. These commonalities can enhance the quality ofcare provided and received; however, common social networks can also erode professionalboundaries and jeopardize patient privacy. Dual relationships in rural settings require pro-viders to clearly understand the ethical aspects of these relationships in order to preservepatient confidentiality.
From a systems design perspective, it is critical that we design and evaluate HIT in thecontext of the end users. The priority issues we identified show the breadth of issues thatcould be considered as we design and evaluate HIT. The overall message is the need toevaluate pre- and post-implementation to ensure the HIT fits with the complexity ofcare delivery. A key system design implication is the need to design interoperablesystems to enable the sharing of data across different settings. To address that issue the
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development of interoperability frameworks for HIT has become a government priority inseveral countries. Canada has formed Canada Health Infoway in order to develop an inte-grated electronic health record system and national strategy for data exchange [33]. Austra-lia has a national e-health strategy for electronically collecting and exchanging healthinformation in order to improve the delivery of healthcare services [34] while the UKformed the Connecting for Health (CFH) strategy in 2005 with the purpose of deliveringa national program for healthcare IT [35]. However, it is significant to note that many ofthose national e-health strategies are struggling to achieve their mandates. In the UK,the CFH strategy has been plagued by criticism, delays and cost overruns and is currently4 years behind schedule [36]. Similarly in Canada, the initial goal of Canada HealthInfoway was for 50% of Canadians to have an electronic health record by 2010. Theachievement of that goal has also been challenging. Many of these national-level HITstruggles are due to resistance from the users of systems because of interoperabilityissues at the people and process level [37]. While EHR systems may be based on a solidtechnical architecture, the people and sociotechnical issues are not brought to lightuntil the systems are implemented in real clinical settings. Designing interoperable HITmust include interoperable systems and interoperable people and healthcare processes.
Our findings can also contribute to the development of policy to support rural HPCdelivery. From a policy perspective, it is critical to have cooperation between differenthealth authorities to ensure that data are collected and shared across different settings.Support and active participation is needed from government at all levels to help developand implement common models of care delivery and to ensure that HIT helps addresskey challenges such as access to services, continuity of care and the delivery of effectiveand efficient patient-centered care. Governments must also commit to the long-termvision that is necessary to see HIT projects to their completion.
Our paper has limitations. One is that the results were derived from a roundtable dis-cussion in one region and thus different issues and priorities may emerge in other settingsas well as in other domains of medicine. However, the framework helps contextualizesome of the sociotechnical and ethical aspects of HIT usage and it provides a meta-model to act as a starting point for requirements engineering to support HIT design andevaluation in other rural settings. Future research will involve seeing the extent to whichour results transfer to other settings. The results in this paper are an important stage ofa larger project to design an information system for patient-centered HPC in a ruralhealth authority in Nova Scotia, Canada. The design, implementation and evaluation ofthe system will be informed by the results from this paper. Another limitation is thatalthough the data were acquired in 2008, it took 2 years for the analysis to be completedand reported. However, that time from analysis to publication is consistent with otherqualitative studies [8, 23].
Declaration of Interest: The authors report no conflicts of interest. The authors alone areresponsible for the content and writing of the paper.
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