Francis, I. (Fall, 2017). Using Classical Ethical Principles to Guide mHealth Design. Online Journal of Nursing Informatics (OJNI), 21(3), Available at http://www.himss.org/ojni
Mobile phones have become ubiquitous global phenomena. A multitude of applications (apps) have been designed to facilitate acquisition and delivery of health-related information via mobile phones. The term “mHealth” pertains to apps designed to improve diagnosis and personalize care. Ethical concepts and constraints impact the design of mHealth applications, and the use of technology in caring science. The nurse informatician, bridging the caring science/technical divide, is perfectly situated to undertake analysis of ethical concerns pertaining to mobile health application design, consistent with the Collaboration standard of practice. The classical medical ethics principles of beneficence, nonmaleficence, autonomy and justice can be used to address ethical dimensions of mHealth application design. A review of the current literature yielded a substantial number of ethical considerations. Cross-mapping these themes to the classical principles enabled meta-analysis. Avoidance of harm and preservation of patient autonomy emerge as the most pressing design concerns. Privacy, confidentiality, and the alteration of the patient-provider relationship must be carefully evaluated during the design phase, in order to minimize risks and concentrate on providing the greatest benefits without undue ethical conflict. Nursing informaticians are key members of the interdisciplinary team, facilitating communication and collaboration, and can promote adherence to the highest ethical standards.
Mobile phones are now a globally available communications tool, providing telephonic and internet access. Due to smart phones’ capacity to deliver computer and communication capabilities, third-party software apps are proliferating as a means to improve diagnosis and personalize health care. This usage has been termed mobile health or “mHealth”. Using a wide array of instruments, sensors, and other technologies, patient data can be transmitted to clinical and/or research teams, enabling data analysis and facilitating response time. However, the capacity of mobile phones to collect sensitive identifying and personal health information (PHI) necessitates an examination of ethical considerations (Carter, 2015). Utilizing classical ethical principles to classify and organize the analysis of ethical considerations found in the current literature provides an effective framework for meta-analysis of ethical concerns. This builds the scaffolding for ethical application design. Nursing informaticians are well positioned to undertake such an analysis, with education and training in ethics, technology, and the art of caring science.
Ethical Theory and Principles
The provider/patient relationship is based upon the idea that the provider owes a duty to the patient by the nature of the relationship. Deontological ethics explore the concept of duty as a rational respect for the fulfillment of duty to others, emphasizing the dignity of human beings. Situation ethics, a branch of deontological ethics, most closely describe the relationship between medical providers and patients. Based on an individual’s unique circumstances and the establishment of a caring relationship, situation ethics guide the decision maker to the most humanistic course of action (Guido, 2014).
Ethical principles are utilized in decision-making in all disciplines involved in medical service delivery – from biomedical research and medical device design to nursing and medical practice. The four most widely known and utilized ethical principles in medicine are autonomy, beneficence, nonmaleficence, and justice (Guido, 2014). Examination of each will permit the mapping of ethical concepts evident in the literature review to the pertinent ethical principle.
Autonomy encompasses self-determination or the ability to access information pertinent to decision making, independence or following one’s own values, freedom to choose a course of action free of coercion, and agency or the power to be in control of and responsible for one’s actions (Guido, 2014).
Beneficence obligates the health care professional (HCP) to promote good and provide assistance to others. It can also be interpreted as promoting the patient’s unique view of health and individual perception of good health (Guido, 2014). At times, the patient’s unique perspective may conflict with generally accepted norms regarding what a good course of action should be.
Nonmaleficence, perhaps best known in relation to medicine, is the principle that one should do no harm. Included is avoidance of risk of harm. It is apparent that some interventions carry risks or harms, but beneficial outcomes may outweigh the harms. A common example is the discomfort experienced with an injection, which is minor compared to the afforded relief of sickness or pain. A detriment-benefit analysis can be used to compare the benefits of an intervention with potential or actual harms (Guido, 2014).
Justice requires that all people be treated fairly and equally. Distributive justice asks a civil society to ensure that benefits and burdens are distributed among its members in ways that are fair and just. Justice is central to the core concepts of ethical behavior, and rests upon mutual recognition of human dignity (Guido, 2014).
Technological Concepts and Ethical Practice
Adapting ethical decision making to the rapidly expanding technological landscape presents many challenges. However, the above four principles remain relevant, and form the basis for diverse models and analyses of ethical questions and health enabling technology.
Caring science is based on ethics, human good, and the patient’s absolute dignity, core principles of nursing practice. Examining the use of technology in all of its current applications is daunting. Limiting their exploration to technologies used in caring interventions and to those used by patients/families themselves (as opposed to those only useable by trained healthcare professionals), Korhonen, Nordman, & Eriksson (2015) identified concepts and questions that can be used to frame this discussion.
Conceptually, the use of technology in caring sciences can be represented by three overlapping spheres; 1) technology as a device or product including information communication technology (ICT), 2) technology as a process for helping people, and 3) technology as a service that facilitates care. Each sphere carries ethical concerns. Technology as a device raises the issues of safety, benefits, and prevention of potential harms. As a process, human dignity, autonomy, and informed consent must be addressed. The service aspect brings forward concerns related to human rights, privacy and confidentiality (Korhonen et al., 2015).
The use of technology yields benefits including enhanced communication and symptom management. Ethical concerns arise regarding willingness or ability to use technology, disconnection from human aspects of care, and potential for inequitable availability. The use of technology for good (beneficence) is evident in multiple studies showing outcomes ranging from better self-management of illness to improved patient satisfaction in terms of access to health care. Rural residents in particular report improved health care access, as transportation issues are minimized or eliminated. Threats to human good include potential consequences if information received is misunderstood, increased dependence on technology, and lack of consistent evidence demonstrating the effectiveness of ICT in health promotion (Korhonen et al., 2015).
The possibility for harm raises the ethical principle of nonmaleficence. Harm might occur as a result of actions undertaken without understanding presented information, if the technology fails, or if privacy and confidentiality are breached. Threats to autonomy arise when users do not understand or give their informed consent. Justice is threatened when similar technology is not available for everyone, and when the patient has limited ability to use it (Korhonen et al., 2015). It is clear that the ethical principles of beneficence, nonmaleficence, autonomy and justice pertain to the use of technology in caring science. An examination of the literature specifically relating to the use of mHealth technology follows.
A search was conducted using the databases of CINAHL, Google Scholar, Medline, Research Gate, Sage Journals Online, Proquest, Pubmed, and the Cochrane Library. Advanced search fields were used, limiting results to articles published in peer-reviewed journals or dissertations in which the keywords ethic* and mHealth or mobile health appeared in the abstract. Initial screening of the results yielded a total of 28 articles. Of these, 11 pertained mainly to ethical design of research rather than the more applied question of application design considerations. The remaining 17 articles were read and specific issues grouped under general classifications on a grid. Classifications derived from the first reading were; problems relating to the mobile device itself, privacy and security concerns, lack of evidence of efficacy, informed consent and disclosure, data selection and interpretation, communications to the patient from the app, inclusion/exclusion, and shifting responsibility for care from provider to patient. Each general classification was further analyzed to uncover themes/patterns, and these were cross-mapped to the four core ethical principles on a separate grid.
Issues relating to beneficence center on the need to ensure that only evidence-based interventions are offered, which focus more on individual patient needs than those of clinicians or researchers. A significant number of potential harms were identified, along with strategies to mitigate them. Harms were associated with breach of data, improper interpretation of data, patient over-reliance on the app, inadequate comprehension of, or inability to access educational content, and possibility of incorrect data entry. Similarly, a large number of issues pertaining to autonomy were identified, including data ownership and sharing, ability to choose one’s own course of action, obtaining legitimate informed consent, release of information to third parties, and shifting of power between physician and patient. Justice concerns focused on inequities affecting availability of device and internet services, including socioeconomic and geographic considerations, technological and health literacy, usability for patients with disabilities, and concerns related more specifically to research situations. The actual mapping of all results to the final grid is found Table 1.
Ethical concerns in developing mobile health applications, although technology-specific, do not diverge from classical aspects of the patient-provider relationship. As new and innovative apps emerge, return to an examination of ethical issues in light of the four principles forming the ethical basis for medical care is appropriate. The need to be of benefit and to be available for use by all are less complicated issues than the need to avoid harms and maintain autonomy. Due to the ICT capabilities offered by mobile phones, inherent risks to privacy and confidentiality must be addressed. The introduction of a third party (machine) into the provider-patient dynamic alters relationships, both enabling patients to take greater control of their care and burdening them with responsibility to do so. By taking these issues into consideration during the design phase, mHealth app creators can minimize risks and concentrate on providing the greatest benefits without undue ethical conflict. Nurses are patient advocates, and have long been considered the “last line of defense”. Nursing informaticians, consistent with the Collaboration Standard of Practice, can play a key role in identifying ethical considerations and ensuring that mHealth application design is consistent with the highest ethical standards.
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Isabel Francis is currently working with an interdisciplinary team from Michigan Technological University to design, test, and implement an mHealth app for diabetic patients living in remote, inaccessible areas of Michigan’s Upper Peninsula. She has a Baccalaureate degree in Nursing and a Master’s degree in Public Administration (health care concentration). She will complete a Master’s of Science in Nursing (MSN) degree in the specialty area of Informatics in June of 2017. During the course of her studies, she has attended the HIMSS 17th annual meeting as a Program Assistant, and more recently the HIMSS South Florida Chapter HIT Days in Tallahassee as a member of the Advocacy Committee. She is a passionate supporter of health information technology and an equally passionate patient advocate. Employed in health care since the early 1980’s she has witnessed and participated in the transitioning of health care information systems from paper and pen to pixel and digital record. Her first publication, “Nursing Informatics and the Metaparadigms of Nursing”, can be found in the winter, 2017 issue of the Online Journal of Nursing Informatics (Volume 21). Her ongoing goals are to educate and assist others to fully embrace and utilize technology in both clinical and administrative applications, and to advocate for greater health and wellness for all.