The Alberta government is in the process of implementing a clinical information sharing (CIS) system called Connect Care, which has been created in partnership with Alberta Health Services (AHS) and Epic Systems Corporation. The leap to a province-wide CIS system was made after an independent review of AHS by accounting firm Ernst and Young found financial inefficiencies in AHS operations (Government of Alberta, 2020). According to a report by the Auditor General of Alberta (2020), Connect Care will cost more than one billion dollars, be used by more than 100,000 clinicians, and house the information of over four million Albertans.
Given the increase in the prevalence of chronic disease, in combination with strained health care resources and an ageing demographic, e-health and CIS have the potential to contribute to a better quality of life for all Canadians (AHS, 2018). CIS also has the potential to improve the quality and continuity of care across medical disciplines. With access to medical records, clinicians can have a better understanding of referring practitioners’ ordered medical tests and findings, and of the efficacy of previous treatments, medications, and other interventions (Adler-Milstein & Jha, 2012; Teich, 1998). Along with these benefits, however, are several risks associated with using a digital healthcare platform.
Issues of cybersecurity, patient privacy, secondary data usages, and equitable distribution of assets all present inherent risks to CIS stakeholders. These stakeholders include AHS and their affiliates, regulatory bodies of practitioners, the Office of the Information and Privacy Commissioner of Alberta, health profession associations, health education and research institutes, the University of Alberta, the University of Calgary, clinicians, and patients (AHS, 2018).
Healthcare providers are bound to laws and their own oaths, which include upholding justice, beneficence, nonmaleficence, and patient autonomy. As such, we use a deontological perspective to identify the benefits and challenges of Connect Care. A deontological theory “emphasizes moral obligation and the rule-based nature of morality” (Farrow, 2016, p. 101). This chapter aims to address the question: Should Albertans be given autonomy over the uploading of and subsequent access to their medical information through Connect Care?
Description of Ethical Issues
The healthcare industry is seeing a major shift towards digitization of information for better management of time and resources. Finding increased efficiencies is necessary as national demographics are becoming more dependent on the medical system for chronic illness management (Gray et al., 2009).
Connect Care can reduce healthcare costs by allowing practitioners to access data from other healthcare providers and locations. Broader access to data can also reduce medical error prevalence and testing duplications, increase administrative efficiency, expand access to quality care, and help shift the medical system from reactive to preventative care through the use of big data and analytics (Béranger, 2015). Additionally, it is conducive to a more holistic and interdisciplinary approach to medicine. The goals of Connect Care and other CIS systems are to achieve high-quality, efficient healthcare, and to advance scientific research within the medical community (AHS 2018; Haux, 2010).
Although there is legislation protecting medical and digital records in Alberta, breaches of highly secured data can occur. In the healthcare system, multiple people and professions require access for functionality. As a result, there is more potential for issues surrounding privacy, especially with a digitized system housed in a central location. The information in Connect Care will be controlled by AHS and stored in a provincial data centre within Alberta (AHS, 2018).
The benefits to individual patients as well as applications for advancing science, medical care, and public health must outweigh the possible negative outcomes. With the introduction of e-health technology, an increasing number of medical providers generate clinical data as a by-product of service. The availability of these data sets raises privacy concerns, yet sharing the data is essential for public health, longitudinal patient care, clinical research, and the shift to a preventative model of healthcare (Geissbuhler et al., 2013). If patients can select which information is uploaded or omitted from their files, or choose not to participate, it can skew the data and introduce data bias (Hill et al., 2013). Incomplete or missing data sets mean the aggregated data will be an inaccurate representation of the provincial population’s health status. According to Perera et al. (2010), 20% nonparticipation could have major detrimental effects on research due to selection bias. If the data for any demographic or condition are withheld, then existing data sets can be misrepresentative of the population’s needs, which could impact the allocation of resources. With all of these factors in mind, one must ask, do the personal outcomes and desire for privacy of individuals take a back seat to the necessity of broad-scale data collection for the betterment of all Albertans?
Connection of Ethical Issue to Privacy, Data Security and Informed Consent
Access to CIS and the networks in which these systems are housed pose security issues, not solely because of hackers but also because of communication breakdowns between providers and patients for intended and secondary data usages. It is ironic that the characteristics regarded as the strengths of CIS are the same characteristics that create health information privacy concerns.
Inadequate Updates and Protocols
The IT infrastructure in healthcare is relatively new, and a significant amount of funding has gone to the upfront costs for Connect Care. Typically, organizations hoping to comply with CIS initiatives spend around 95% of their IT budgets on implementation and adoption, with less than 5% spent on security (Kruse et al., 2017). This insufficient investment of resources for maintenance and security make malware, information theft, and security breaches possible.
Ransomware Malware Hackers
Healthcare is currently one of the sectors most targeted by cybercriminals (Coventry & Branley, 2018; Kruse et al., 2017). “Hackers continue to take advantage of lax security to steal medical health records, deny access to health services or cause intentional harm” (Coventry & Branley, 2018, p. 50). Stolen prescriptions and illegal distribution of controlled substances can have serious implications for the general public (Kruse et al., 2017). In the United Kingdom, when a healthcare institution fell prey to a malware attack, the entire IT system was shut down, resulting in the cancellation of surgeries as well as outpatient appointments for four days (Coventry & Branley, 2018). Disruptions due to security breaches or malware attacks can have detrimental outcomes depending on the seriousness and urgency of the health services that are affected.
While CIS can allow for a more holistic approach to healthcare through interdisciplinarity, it can also create environments that may make patients feel betrayed or deceived. When a person accesses healthcare, there is implied consent for the practitioner to gather data, upload patient information, and use that data for the primary purpose of addressing medical issues. What may not be implied is consent for the sharing of this information with other medical professionals or for public health and research purposes. For CIS to be effective, it requires that information be shared between healthcare providers. This could include expected providers such as those working within diagnostics (e.g., pathologists, radiologists, etc.) and unexpected practitioners like occupational therapists, school psychologists, or disability support workers (Eastwood & Maitland-Scott, 2020). “The difficulty lies in the fact that the doctor may take it for granted that a holistic approach to health care and any subsequent information-sharing is in the best interests of patients whereas patients may neither expect nor approve of such an approach” (Eastwood & Maitland-Scott, 2020, p. 1). To provide the best medical care and patient experience, patients should be made aware of the potential benefits and challenges that accompany information sharing.
Secondary Usage and Informed Consent
Often, digital healthcare platforms have a secondary use for data, which can provide valuable insight into the health of the overall population. The collected data should be used for a secondary use only after all personal identifiers have been removed. It can be used in lieu of in vivo research studies, providing valuable demographic information without being intrusive (Hill et al., 2013; Geissbuhler et al., 2013; Kruse et al., 2017). Further, the knowledge gained from aggregate or population data sets can be used to further medical knowledge, produce reliable health trajectories, and even predict epidemiological outbreaks (Hill et al., 2013; Spencer et al., 2016).
Consent for the secondary use of data should not be implied when a person accesses medical services. This is especially true given that the information may be automatically uploaded by caregivers, and patients may not have autonomy over what information is uploaded. However, anonymized data are often used for research purposes without consent or even patient awareness (Spencer et al., 2016). In 2019, Germany passed legislation that allows for the use of medical information without informed consent for research purposes (Richter et al., 2019). Society may be heading towards a standard where consent is not required for the secondary use of anonymous medical information. The secondary use of medical data, even with all personal identifiers removed, for research and public health directives should be explicitly explained to the patient, and regulations surrounding consent ought to be implemented.
Although there have always been ethical issues surrounding the unauthorized access of medical information, CIS platforms increase the risk and reach of this access. Lack of professional conduct by healthcare employees who search for specific patients, such as celebrities, friends, family, or other healthcare employees, can carry a greater risk due to a larger database with a single point of access (Sulmasy et al., 2017). There is one significant benefit for Connect Care in this aspect; the system can track staff access, which is a key security feature that was previously unavailable.
Integrity by Avoiding Harm and Minimizing Risk
For Connect Care to be successful, it must uphold medical integrity, avoid harm, and minimize risks. To accomplish these requirements, both patients and providers must trust the Connect Care system, all stakeholders in the partnership, and each other, and there must be equitable access across the province.
Standardized Scales and Universal Language
To effectively use Connect Care across the province, there must be standardized instruments for acquiring data. These standards should include scales, clinical assessments, and quality indicators (Gray et al., 2009). Only when the entire healthcare network uses the same standards can information be shared accurately across locations and professions. All stakeholders, including patients, need to be versed in the meaningfulness of datified information. With a universal language, stakeholders will be able to have a ubiquitous relationship of care that can result in better health, as well as better opportunity for open and clear communication (Béranger, 2015; Gray et al., 2009; Kronenfeld, 2014).
Learning how to interface with Connect Care can be perceived as a barrier to cohesive care. Until stakeholders are familiar with the system, they may experience frustration, which could reflect poorly on the operability and functionality of Connect Care. In studies conducted by Sánchez-Polo et al. (2019) and Lee (2018), successful implementation of healthcare technology depended on opportunities to learn and utilize active feedback loops for success. Both learning and feedback processes require that the patient and provider have sufficient knowledge and comfort using Connect Care. Having early adopters learn to use the system together, and then having these experts teach subsequent users, can mitigate feelings of frustration (Lee, 2018) and create better relationships between patient, provider, and CIS. When patients and providers trust each other and the system, better patient compliance can be achieved (Sánchez-Polo et al., 2019). Open communication and the opportunity for continuous learning can also mitigate any bias. As noted by Sánchez-Polo et al. (2019), patients and providers can help each other to problem-solve, which helps overcome mutual barriers and the prejudices that could exist within the system.
Equitable access must be at the forefront of a province-wide, digitally implemented healthcare network. CIS can pose a greater risk for health imbalances if the service does not extend to already underserved communities. Access to the internet and internet-enabled devices must be available in every community in the province. The use of technology within healthcare can bridge gaps and make access to resources more equitable. This, however, only applies when all regions have the same access to the technology and options for care.
In underserved communities, such as rural, remote, and Indigenous regions, Connect Care accessibility faces challenges. In 2016, the Canadian Radio-television and Telecommunications Commission declared broadband internet access a basic human service (Kupfer, 2016) and made plans for 90% of the country to be connected by 2021; however, the infrastructure is lacking, and affordability remains an issue for many Canadians, even with the federal Connecting Families Initiative, which provides low-cost internet and occasionally internet-enabled devices to eligible families (Government of Canada, 2019). Connectivity in rural and Indigenous areas are disproportionately affected. How can Connect Care serve these communities if the resources are not readily available to them? AHS is working to extend wireless networks to all the facilities they service; however, Indigenous and rural communities often do not have permanent AHS locations, and as such will not have the same access or priority for internet infrastructure. The Indigenous population is one of the most at-risk communities for poor health outcomes (Fitzpatrick et al., 2016). Without the ability to access their medical information, how can Indigenous populations provide opportunities for feedback loops to improve the system, and be empowered to make informed decisions regarding their health?
Connectivity Related to Health Disparities
Health care disparities matter more if they result in negative health outcomes (Clarke et al., 2020; Kronenfeld, 2014). Without equitable access, data collection will be incomplete or skewed, thereby causing more potential for overlooking and ignoring the needs of underserved communities. “Disparities remain in areas of access, quality, and across many levels and types of care including preventive care, treatment of acute conditions, and management of chronic disease” (Kronenfeld, 2014, p. 9). AHS, the Alberta government, and the Canadian government need to work in conjunction to ensure that rural, remote, and Indigenous populations are considered and included in health initiatives to improve health outcomes. This can be achieved, in part, through widespread reliable and affordable high-speed internet access.
Authentic Contexts, Personal Relevancy and Autonomy
When patients have access to their medical records in Connect Care, an opportunity to promote personal responsibility for health arises (Sulmasy et al., 2017). As patients view their health progress, treatments, and outcomes through Connect Care, they have the tools and access to gain knowledge, to be accountable, and make informed decisions regarding their health. Connect Care can increase participation and engagement in patient health care through access and improved communication, and encourage better public health outcomes.
All patients, with additional focus on at-risk and Indigenous communities, need to be included in the data gathering process to ensure that all Albertans’ health outcomes have a chance of improving. As patients gain awareness of Connect Care and its operability, they can be empowered to make informed choices about their health. Positive outcomes can only occur with ethical and informed information collection, access to Connect Care, and open feedback loops to reduce inherent bias and system prejudices (Fitzpatrick et al., 2016; Sánchez-Polo et al., 2016). Due to historical transgressions against the Indigenous community, especially in studies relating to healthcare (Fitzpatrick et al., 2016), special care and an intentional approach to including Indigenous voices in planning and implementation ought to be taken.
Autonomy and Altruism
Generally, when patients have been informed of the secondary uses of their data for research or public health outcomes, they consent (Grande et al., 2015; Hill et al., 2013; Spencer et al., 2016). Patients have embraced the potential for benefits that sharing their medical data can provide. However, when presented with potential risks, patients express concerns surrounding access and restrictions to information. In previous studies, Perera et al. (2010) found that practitioners and patients desired the ability to limit or restrict access to medical files to reduce the potential for misuse or information breach. This was particularly true when patients had stigmatized conditions like addictions, were abused, or mental health disparities. The desire for restrictions was less prevalent when the information was being used in universities and for medical research, provided personal identifiers were removed (Hill et al., 2013; Perera et al., 2010).
For patient autonomy to be upheld, there ought to be an option for the patient to revoke or limit access to medical records with the guidance of a primary healthcare provider or a panel. This can ensure that patients have a level of autonomy when instances of unauthorized or unethical practitioner access occur. The ability to restrict access to information could be a valuable feature of Connect Care. The logistics surrounding granting or denying record access, as well as access levels within the system, may be worth exploring: Does a registered massage therapist require the same access as a physician? Perhaps a framework for access levels based on profession, and a process for denying access to specific practitioners, ought to be implemented in an acceptable use policy until the logistics surrounding such variances in access can be addressed.
Knowing the benefits of big data within the healthcare system and on populace outcomes, should patients have autonomy concerning what information is uploaded into their medical profiles? Without a fundamental understanding of medical protocol, procedures, or the interconnectivity of healthcare, are patients truly able to make informed decisions regarding which data are required for the best health outcomes both individually and collectively? Connect Care provides an opportunity to include patients in the management of their own health by giving them access to their personal health information. As patients have access to Connect Care, they can view and manage their health status, see the impacts of their decisions, and make better, more informed choices regarding their care; all of these benefits are possible only if all health information is documented. CIS can be a conduit for providing options, answers, second opinions, best practices, and patient empowerment for a better provincial health status.
CIS and the collection of medical and health data can move the healthcare system from reactive to preventative, which can save money and create a healthier population. With the implementation of Connect Care, some major challenges must be addressed. Provincial healthcare spending needs to account for maintenance and updates within the network to keep medical data private. Healthcare practitioners require continuing education surrounding privacy protocols, new malware, and avoidance of unethical access. Healthcare professionals ought to actively seek informed consent for the secondary uses of medical data even when personal identifiers are removed.
A universal language surrounding datafied information should be in place to ensure smooth transitions between facilities, clinicians, and patients. Accessibility and equitable distribution of health resources can only be achieved when the entire population can use Connect Care equally. Currently, broadband internet infrastructure and affordability are two inhibitors for inclusion of the most at-risk demographics within Alberta. Only when all Albertans have equitable access to Connect Care can a positive provincial shift in health outcomes be anticipated. Provincial and federal legislation for equitable, accessible, and affordable internet access can help to reduce the data divide and aid in better healthcare outcomes.
The general population does not have a sufficient background in medical education or data analysis to understand how incomplete data sets affect bias and allocations of resources. For these reasons, protocols should be put in place to support patients in determining which of their data are uploaded into Connect Care. For example, the ability to grant or deny access to specific users with the guidance of a primary healthcare provider or review panel is an avenue to explore. The inability to access a file would remove the opportunity for unethical or unauthorized access to that information. Additionally, different levels of access to information dependent upon the needs of specific professions could promote public trust and allow for autonomy over data. Finally, a review of and amendments to acceptable use policies within AHS and government legislation related to healthcare information and consent, use, and disclosure should take place to address the incorporation of modern technology into healthcare provision.
Questions to Consider
- In what ways can we train medical professionals to inform and educate the public of all uses of their medical information?
- How can we ensure that medical professionals have sufficient training to avoid malicious cyberattacks, such as phishing?
- If offered, will opting out of sharing data for stigmatized conditions, such as mental health disorders, lead to unintentional underrepresentation of those conditions, further increasing stigma?
- Is inequality of patient access to their own medical information morally and socially acceptable?
- How can we test and implement a system that allows for access restrictions based on the recommendations of healthcare providers, the desire of the patient, and approval from a review board?
- When studies using medical data are publicly released, what will the implications be for health insurance policies and premiums?
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