Accepted for/Published in: JMIR Cancer
Date Submitted: Aug 3, 2021
Date Accepted: Oct 28, 2021
Date Submitted to PubMed: Nov 25, 2021
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Oncology Patients’ Experiences with Novel Electronic Patient Portals to Support Care and Treatment: A Qualitative Study with Early Users and Non-users of Portals in Alberta, Canada
ABSTRACT
Background:
With the current proliferation of clinical information technologies internationally, patient portals are increasingly being adopted in health care. Research, conducted mostly in the United States, shows that oncology patients have a keen interest in portals to gain access to and track comprehensive personal health information. In Canada, patient portals are relatively new and research into their use and effects is currently emerging. There is a need to understand oncology patients’ experiences of using eHealth tools and to ground these experiences in local sociopolitical contexts of technology implementation, while seeking to devise strategies to enhance portal benefits.
Objective:
The purpose of this study was to explore the experiences of oncology patients and/or their family caregivers when using electronic patient portals to support their healthcare needs. We focused on how Alberta’s unique, two-portal context shapes experiences of early portal adopters and non-adopters, in anticipation of a province-wide rollout of a clinical information system in oncology facilities.
Methods:
This qualitative descriptive study employed individual semi-structured interviews and demographic surveys with 11 participants. Interviews were audio-recorded and transcribed verbatim. Data were analyzed thematically. The study was approved by the University of Alberta Human Research Ethics Board.
Results:
In the Fall 2020, most participants had access to one of the two Alberta’s patient portals and identified ways in which this portal was supportive of their healthcare needs (or not). Four major themes were generated from the data: (i) experiencing doubt and the desire for transparency; (ii) seeking to become an informed and active member of the healthcare team; (iii) encountering complexity; and (iv) emphasizing the importance of the patient-provider relationship.
Conclusions:
Although people diagnosed with cancer and their family caregivers considered an online patient portal as beneficial, they identified several areas that limit how portals support their oncology care. Providers of healthcare portals are invited to recognize these limitations and work toward addressing them.
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