Adoption of Electronic Personal Health Records in Canada: Perceptions of Stakeholders

Abstract

Background: Healthcare stakeholders have a great interest in the adoption and use of electronic personal health records (ePHRs) because of the potential benefits associated with them. Little is known, however, about the level of adoption of ePHRs in Canada and there is limited evidence concerning their benefits and implications for the healthcare system. This study aimed to describe the current situation of ePHRs in Canada and explore stakeholder perceptions regarding barriers and facilitators to their adoption. Methods: Using a qualitative descriptive study design, we conducted semi-structured phone interviews between October 2013 and February 2014 with 35 individuals from seven Canadian provinces. The participants represented six stakeholder groups (patients, ePHR administrators, healthcare professionals, organizations interested in health technology development, government agencies, and researchers). A detailed summary of each interview was created and thematic analysis was conducted. Results: We observed that there was no consensual definition of ePHR in Canada. Factors that could influence ePHR adoption were related to knowledge (confusion with other electronic medical records [EMRs] and lack of awareness), system design (usability and relevance), user capacities and attitudes (patient health literacy, education and interest, support for professionals), environmental factors (government commitment, targeted populations) and legal and ethical issues (information control and custody, confidentiality, privacy and security). Conclusion: ePHRs are slowly entering the Canadian healthcare landscape but provinces do not seem wellprepared for the implementation of this type of record. Guidance is needed on critical issues regarding ePHRs, such as ePHR definition, data ownership, access to information and interoperability with other electronic health records (EHRs). Better guidance on these issues would provide a greater awareness of ePHRs and inform stakeholders including clinicians, decision-makers, patients and the public. In turn, it may facilitate their adoption in the country.

An overview of electronic personal health records

“…A review of the literature on factors affecting the acceptance and adoption of ePHRs by consumers in developed and developing countries indicated that some factors are relevant to both developed and developing countries [25][26][27]; these include technical, individual, environmental, and social factors [27]. Technical factors relate to the usability of the system or features that contribute to the feasibility of technology use, such as effort and performance expectancy of the offered technology.…”

“…They found privacy and security of ePHRs were of concern to 49% of respondents. Specifically, users were hesitant to embrace the system because it contains sensitive personal information that could be hacked [26,35,36]. Therefore, information security is of significant importance when adopting ePHRs, due to external threats of unauthorised access to private sensitive information.…”

Protection of Privacy of Information Rights among Young Adults with Developmental Disabilities

“…Caregivers who assume an allied care giving role not recognized as health information custodian None 12. Gagnon, et al, 2016 Qualitative study Canadian service providers Not identified Electronic personal health records Use Access Disclosure Confidentiality Autonomy 1. Confusion, lack of awareness 2.…”

“…Factors related to organizations and their processes, specifically to staff relations that act either as barriers or facilitators of access and utilization of privacy of information rights, were identified at the meso level. Barriers included a persistent lack of willingness on the part of organizations to share their information databases in order to ease the stress on YADD and their families (Clement, & Obar, 2016 ; Desai, 2013 ; Dyke et al, 2016 ; Gagnon et al, 2016 ; Larivie’re-Bastien, & Racine, 2011 ; Peekhaus, 2008 ; Mills, et al, 2003 ; Ministry of Health and Long-Term care (MHLTC), 2006 ; Lacobucci, 2014 ; Urowitz et al, 2008 ) and lack of commitment to use of technological advances to protect information privacy rights (Mills, et al, 2003 ; Siegel et al, 2009 ; Urowitz et al, 2008 ). Throughout the review, YADD needs were found to be unrepresented in organizational processes (Austin, 2006 ; CACL, 2011 ; Clement, & Obar, 2016 ; Siegel et al, 2009 ).…”

Privacy versus Open Science

“…Similar efforts have been underway for some time across multiple countries ( Ludwick & Doucette, 2009). While the potential advantages are substantial, the government ownership of data remains controversial (Gagnon et. al, 2016;Anderson, 2007).…”