Oncology Patients’ Experiences With Novel Electronic Patient Portals to Support Care and Treatment: Qualitative Study With Early Users and Nonusers of Portals in Alberta, Canada

BackgroundWith 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...

Full description

Bibliographic Details
Main Authors: Amanda D Santos, Vera Caine, Paula J Robson, Linda Watson, Jacob C Easaw, Olga Petrovskaya
Format: Article
Language:English
Published: JMIR Publications 2021-11-01
Series:JMIR Cancer
Online Access:https://cancer.jmir.org/2021/4/e32609
_version_ 1797735554151874560
author Amanda D Santos
Vera Caine
Paula J Robson
Linda Watson
Jacob C Easaw
Olga Petrovskaya
author_facet Amanda D Santos
Vera Caine
Paula J Robson
Linda Watson
Jacob C Easaw
Olga Petrovskaya
author_sort Amanda D Santos
collection DOAJ
description BackgroundWith 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. ObjectiveThe purpose of this study was to explore the experiences of oncology patients and their family caregivers when using electronic patient portals to support their health care needs. We focused on how Alberta’s unique, 2-portal context shapes experiences of early portal adopters and nonadopters, in anticipation of a province-wide rollout of a clinical information system in oncology facilities. MethodsThis qualitative descriptive study employed individual semistructured 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. ResultsParticipants currently living with nonactive cancer discussed an online patient portal as one among many tools (including the internet, phone, videoconferencing, print-out reports) available to make sense of their diagnosis and treatment, maintain connections with health care providers, and engage with information. In the Fall of 2020, most participants had access to 1 of 2 of Alberta’s patient portals and identified ways in which this portal was supportive (or not) of their ongoing health care needs. Four major themes, reflecting the participants’ broader concerns within which the portal use was occurring, were generated from the data: (1) experiencing doubt and the desire for transparency; (2) seeking to become an informed and active member of the health care team; (3) encountering complexity; and (4) emphasizing the importance of the patient–provider relationship. ConclusionsAlthough 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 health care portals are invited to recognize these limitations and work toward addressing them.
first_indexed 2024-03-12T13:00:45Z
format Article
id doaj.art-bab424e082134530a8a994da1c5eef22
institution Directory Open Access Journal
issn 2369-1999
language English
last_indexed 2024-03-12T13:00:45Z
publishDate 2021-11-01
publisher JMIR Publications
record_format Article
series JMIR Cancer
spelling doaj.art-bab424e082134530a8a994da1c5eef222023-08-28T19:50:21ZengJMIR PublicationsJMIR Cancer2369-19992021-11-0174e3260910.2196/32609Oncology Patients’ Experiences With Novel Electronic Patient Portals to Support Care and Treatment: Qualitative Study With Early Users and Nonusers of Portals in Alberta, CanadaAmanda D Santoshttps://orcid.org/0000-0001-9371-7008Vera Cainehttps://orcid.org/0000-0001-5561-8156Paula J Robsonhttps://orcid.org/0000-0003-4640-1371Linda Watsonhttps://orcid.org/0000-0002-7802-0082Jacob C Easawhttps://orcid.org/0000-0001-5270-1050Olga Petrovskayahttps://orcid.org/0000-0001-5929-3598 BackgroundWith 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. ObjectiveThe purpose of this study was to explore the experiences of oncology patients and their family caregivers when using electronic patient portals to support their health care needs. We focused on how Alberta’s unique, 2-portal context shapes experiences of early portal adopters and nonadopters, in anticipation of a province-wide rollout of a clinical information system in oncology facilities. MethodsThis qualitative descriptive study employed individual semistructured 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. ResultsParticipants currently living with nonactive cancer discussed an online patient portal as one among many tools (including the internet, phone, videoconferencing, print-out reports) available to make sense of their diagnosis and treatment, maintain connections with health care providers, and engage with information. In the Fall of 2020, most participants had access to 1 of 2 of Alberta’s patient portals and identified ways in which this portal was supportive (or not) of their ongoing health care needs. Four major themes, reflecting the participants’ broader concerns within which the portal use was occurring, were generated from the data: (1) experiencing doubt and the desire for transparency; (2) seeking to become an informed and active member of the health care team; (3) encountering complexity; and (4) emphasizing the importance of the patient–provider relationship. ConclusionsAlthough 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 health care portals are invited to recognize these limitations and work toward addressing them.https://cancer.jmir.org/2021/4/e32609
spellingShingle Amanda D Santos
Vera Caine
Paula J Robson
Linda Watson
Jacob C Easaw
Olga Petrovskaya
Oncology Patients’ Experiences With Novel Electronic Patient Portals to Support Care and Treatment: Qualitative Study With Early Users and Nonusers of Portals in Alberta, Canada
JMIR Cancer
title Oncology Patients’ Experiences With Novel Electronic Patient Portals to Support Care and Treatment: Qualitative Study With Early Users and Nonusers of Portals in Alberta, Canada
title_full Oncology Patients’ Experiences With Novel Electronic Patient Portals to Support Care and Treatment: Qualitative Study With Early Users and Nonusers of Portals in Alberta, Canada
title_fullStr Oncology Patients’ Experiences With Novel Electronic Patient Portals to Support Care and Treatment: Qualitative Study With Early Users and Nonusers of Portals in Alberta, Canada
title_full_unstemmed Oncology Patients’ Experiences With Novel Electronic Patient Portals to Support Care and Treatment: Qualitative Study With Early Users and Nonusers of Portals in Alberta, Canada
title_short Oncology Patients’ Experiences With Novel Electronic Patient Portals to Support Care and Treatment: Qualitative Study With Early Users and Nonusers of Portals in Alberta, Canada
title_sort oncology patients experiences with novel electronic patient portals to support care and treatment qualitative study with early users and nonusers of portals in alberta canada
url https://cancer.jmir.org/2021/4/e32609
work_keys_str_mv AT amandadsantos oncologypatientsexperienceswithnovelelectronicpatientportalstosupportcareandtreatmentqualitativestudywithearlyusersandnonusersofportalsinalbertacanada
AT veracaine oncologypatientsexperienceswithnovelelectronicpatientportalstosupportcareandtreatmentqualitativestudywithearlyusersandnonusersofportalsinalbertacanada
AT paulajrobson oncologypatientsexperienceswithnovelelectronicpatientportalstosupportcareandtreatmentqualitativestudywithearlyusersandnonusersofportalsinalbertacanada
AT lindawatson oncologypatientsexperienceswithnovelelectronicpatientportalstosupportcareandtreatmentqualitativestudywithearlyusersandnonusersofportalsinalbertacanada
AT jacobceasaw oncologypatientsexperienceswithnovelelectronicpatientportalstosupportcareandtreatmentqualitativestudywithearlyusersandnonusersofportalsinalbertacanada
AT olgapetrovskaya oncologypatientsexperienceswithnovelelectronicpatientportalstosupportcareandtreatmentqualitativestudywithearlyusersandnonusersofportalsinalbertacanada