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

Document Type : Original Article


1 Faculty of Nursing Science, Université Laval, Quebec City, QC, Canada

2 Research Centre of the CHU de Québec-Université Laval, Quebec City, QC, Canada

3 Centre de recherche sur les soins et les services de première ligne, Centre intégré de santé et services sociaux de la Capitale-Nationale, Quebec City, QC, Canada

4 Faculty of Medicine, Université Laval, Quebec City, QC, Canada

5 Faculty of Law, McGill University, Montreal, QC, Canada

6 Department of Family Medicine, McMaster University, Hamilton, ON, Canada

7 Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada

8 Centre for Addiction and Mental Health, Toronto, ON, Canada

9 Department of Family Medicine, McGill University, Montreal, QC, Canada

10 DeGroote School of Business, McMaster University, Hamilton, ON, Canada


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.
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.
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).
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.


Main Subjects

  1. Leonard KJ, Casselman M, Wiljer D. Who will demand access to their personal health record? a focus on the users of health services and what they want. Healthc Q. 2008;11(1):92-96. doi:10.12927/hcq.2008.19503
  2. Wiljer D, Urowitz S, Apatu E, et al. Patient accessible electronic health records: exploring recommendations for successful implementation strategies. J Med Internet Res. 2008;10(4):e34. doi:10.2196/jmir.1061
  3. European Commission. Protection of personal data. Updated 2016. Accessed January 22, 2016.
  4. Solove DJ. HIPAA Turns 10: Analyzing the Past, Present, and Future Impact. J AHIMA. 2013;22:23-28.
  5. Peekhaus W. Personal health information in Canada: A comparison of citizen expectations and legislation. Gov Inform Q. 2008;25(4):669-698. doi:10.1016/j.giq.2007.05.002
  6. Carrión Señor I, Fernández-Alemán JL, Toval A. Are personal health records safe? A review of free web-accessible personal health record privacy policies. J Med Internet Res. 2012;14:e114. doi:10.2196/jmir.1904
  7. Archer NP, Cocosila M. Canadian Patient Perceptions of Electronic Personal Health Records: An Empirical Investigation. Communications of the Association for Information Systems. 2014;34:20.
  8. Archer N, Fevrier-Thomas U, Lokker C, McKibbon KA, Strauss SE. Personal health records: a scoping review. J Am Med Inform Assoc. 2011;18(4):515-522. doi:10.1136/amiajnl-2011-000105
  9. Williams JB, Weber-Jahnke JH. The regulation of personal health records in Canada. Can J Law Technol. 2010;8(2):241-274.
  10. Urowitz S, Wiljer D, Apatu E, et al. Is Canada ready for patient accessible electronic health records? A national scan. BMC Med Inform Decis Mak. 2008;8:33. doi:10.1186/1472-6947-8-33
  11. Assadi V. Adoption of Integrated Personal Health Record Systems: A Self-Determination Theory Perspective [PhD thesis]. Hamilton: McMaster University; 2013.
  12. Daglish D. Electronic Personal Health Records: A Matter of Trust [PhD thesis]. Hamilton: McMaster University; 2013.
  13. Alberta Health Services. Engaging the Patient in Healthcare: An Overview of Personal Health Record Systems and Implications for Alberta. Edmonton: Alberta Health Services; 2009.
  14. de Lusignan S, Mold F, Sheikh A, et al. Patients’ online access to their electronic health records and linked online services: a systematic interpretative review. BMJ Open. 2014;4(9):e006021. doi:10.1136/bmjopen-2014-006021
  15. Pai HH, Lau F, Barnett J, Jones S. Meeting the health information needs of prostate cancer patients using personal health records. Curr Oncol. 2013;20(6):e561-e569. doi:10.3747/co.20.1584
  16. Emani S, Yamin CK, Peters E, et al. Patient perceptions of a personal health record: A test of the diffusion of innovation model. J Med Internet Res. 2012;14(6):e150.
  17. Lafky DB, Horan TA. Personal health records: Consumer attitudes toward privacy and security of their personal health information. Health Inform J. 2011;17(1):63-71. doi:10.1177/1460458211399403
  18. Luque AE, van Keken A, Winters P, Keefer MC, Sanders M, Fiscella K. Barriers and facilitators of online patient portals to personal health records among persons living with HIV: formative research. J Med Internet Res. 2013;15(1):e8. doi:10.2196/resprot.2302
  19. Cahill JE, Gilbert MR, Armstrong TS. Personal health records as portal to the electronic medical record. J Neurooncol. 2014;117(1):1-6. doi:10.1007/s11060-013-1333-x
  20. The Personal Health Working Group. Connecting for Health: A Public-Private Collaborative. New York: Markle Foundation; 2003.
  21. Skinner HH, Price DJ, Tatham W. Connected Health & Wellness Project Final Report. Canada:  Connected Health & Wellness Project; 2014.
  22. Mynors G, Newsom-Davis E. Guide to Health Records Access. United Kingdom: Patient Information Forum; 2012.
  23. Rozenblum R, Jang Y, Zimlichman E, et al. A qualitative study of Canada's experience with the implementation of electronic health information technology. Can Med Assoc J. 2011;183(5):e281-288. doi:10.1503/cmaj.100856
  24. Webster PC. Albertans to gain electronic access to personal health files. Can Med Assoc J. 2010;182(10):e431-e432. doi:10.1503/cmaj.109-3270
  25. Miriovsky BJ, Shulman LN, Abernethy AP. Importance of health information technology, electronic health records, and continuously aggregating data to comparative effectiveness research and learning health care. J Clin Oncol. 2012;30(34):4243-4248. doi:10.1200/jco.2012.42.8011
  26. Stylus Consulting. Nova Scotia Personal Health Record Demonstration Project: Benefits Evaluation Report. Toronto: Stylus Consulting; 2014.
  27. Alberta Health Services. eHealth and your patients. Updated 2014. Accessed February 11, 2016.
  28. McMaster University Department of Family Medicine. MyOscar: Your Connection To Health. Updated 2011. Accessed February 11, 2016.
  29. McGill Comprehensive Health Improvement Program. MyHealthCheckup website. Updated 2014. Accessed February 11, 2016.
  30. Sunnybrook Health Sciences Centre. MyChart. Updated 2016. Accessed February 11, 2016.
  31. Canadian Medical Association. Health Portal. Updated 2016. Accessed February 11, 2016.
  32. Nightingale. My Patient Access: My patient. My Physician. My Access. Updated 2015. Accessed February 11, 2016.
  33. McKesson Canada. RelayHealth website. Updated 2015. Accessed February 11, 2016.
  34. Telus Health. Telus health space website. Updated 2013. Accessed February 11, 2016.
  35. Mihealth Global Systems. Mihealth website. Updated 2016. Accessed February 11, 2016.
  36. My Digital Primary Health Care. My Digital Primary Health Care. Updated 2015. Accessed February 11, 2016.
  37. Khoury L, Horwood F, Gagnon MP. Legal Norms and Public Policies Impacting ePHR Implementation. Montreal: McGill University; 2014.
  38. Cushman R, Froomkin AM, Cava A, Abril P, Goodman KW. Ethical, legal and social issues for personal health records and applications. J Biomed Inform. 2010;43(5):S51-S55. doi:10.1016/j.jbi.2010.05.003
  39. Piras EM, Zanutto A. “One day it will be you who tells us doctors what to do!” Exploring the “Personal” of PHR in paediatric diabetes management. Inform Tech People. 2014;27(4):421-439.
  40. Goldzweig CL, Orshansky G, Paige NM, et al. Electronic patient portals: evidence on health outcomes, satisfaction, efficiency, and attitudes: a systematic review. Ann Intern Med. 2013;159(10):677-687.
  41. Canada Health Infoway. Electronic Medical Record (EMR). Updated 2016. Accessed February 11, 2016.
  42. Miles MB, Huberman AM. Qualitative Data Analysis: An expanded Sourcebook. 2nd ed. Thousand Oaks: SAGE Publications; 2003.
  43. QSR International. Qualitative Research, Data Analysis Software, NVivo. Updated 2016. Accessed February 11, 2016.
  44. Gagnon MP, Desmartis M, Gagnon J, et al. Framework for user involvement in health technology assessment at the local level: Views of health managers, user representatives, and clinicians. Int J Technol Assess Health Care. 2015;31(1-2):68-77. doi:10.1017/S0266462315000070
  45. Goel MS, Brown TL, Williams A, Cooper AJ, Hasnain-Wynia R, Baker DW. Patient reported barriers to enrolling in a patient portal. J Am Med Inform Assoc. 2011;18:i8-i12. doi:10.1136/amiajnl-2011-000473
  46. Britto MT, Hesse EA, Kamdar OJ, Munafo JK. Parents' perceptions of a patient portal for managing their child's chronic illness. J Pediatr. 2013;163(1):280-281. doi:10.1016/j.jpeds.2013.02.041
  47. Hordern A, Georgiou A, Whetton S, Prgomet M. Consumer e-health: an overview of research evidence and implications for future policy. HIM J. 2011;40(2):6-14. doi:10.1177/183335831104000202
  48. Storni C. Diabetes self-care in-the-wild: Design challenges for personal health record systems and self-monitoring technologies. Inform Tech People. 2014;27(4):397-420. doi:10.1108/ITP-02-2013-0032
  49. Day K, Gu Y. Influencing factors for adopting personal health record (PHR). Stud Health Technol Inform. 2012;178:39-44.
  50. Yamin CK, Emani S, Williams DH, et al. The digital divide in adoption and use of a personal health record. Arch Intern Med. 2011;171(6):568-574.
  51. Tenforde M, Jain A, Hickner J. The value of personal health records for chronic disease management: What do we know? Fam Med. 2011;43(5):351-354.