Oncology Patients’ Experiences of Using Electronic Patient Portals and Other Online Tools to Support Care and Treatment

Abstract

With the current proliferation of clinical information technologies in Canada, patient portals and other online tools are becoming increasingly adopted in healthcare. Many people use the Internet for health-related purposes to connect with peer support groups and read about their medical conditions and prescribed medications. Research studies show that oncology patients have a keen interest in portals, as they often require more comprehensive health information when compared to the general population. In Canada, patient portal technology is relatively new and evidence on the benefits of portals is limited. Moreover, research has not been conducted in Canada regarding the use and effects of patient portals in oncology practice. This qualitative descriptive study employed individual semi-structured interviews with oncology patients and/or their family caregivers to explore patient experiences of using portals and other online tools for care and treatment. Eleven participants were enrolled in the study. Interviews were audio-recorded and transcribed verbatim. Using thematic analysis, the following themes were identified: (i) experiencing doubt and the desire for transparency; (ii) becoming an informed and active member of the healthcare team; (iii) encountering complexity; and (iv) emphasizing the importance of the patient-provider relationship. Although participants considered online tools as beneficial, it was unclear whether they actually fostered feelings of empowerment; thus, further research is needed to clarify this association