Adult patient access to electronic health records

Ammenwerth, Elske; Neyer, Stefanie; Hörbst, Alexander; Muêller, G.; Siebert, Uwe

doi:10.1002/14651858.cd012707.pub2

Cited by 33 publications

(26 citation statements)

References 108 publications

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“…Our findings complicate and add nuance to the aforementioned literature. Similar to findings reported in Ammenwerth et al [ 23 ], portals did not necessarily foster feelings of empowerment. Participants spoke of the challenges they encountered when attempting to become an informed and active member of the health care team.…”

Section: Discussionsupporting

confidence: 87%

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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

Santos¹,

Caine²,

Robson³

et al. 2021

JMIR Cancer

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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 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. Methods This 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. Results Participants 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. 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 health care portals are invited to recognize these limitations and work toward addressing them.

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Section: Discussionsupporting

confidence: 87%

“…(Refer to Multimedia Appendix 1 for a table comparing portal features in Alberta. Portal functionalities are categorized based on Ammenwerth et al [ 23 ] with adaptations).…”

Section: Introductionmentioning

confidence: 99%

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

Santos¹,

Caine²,

Robson³

et al. 2021

JMIR Cancer

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“…It can, for example, be used to systematically describe patient portals as part of systematic reviews on their impact. The need for a taxonomy in this context has already been stressed in patient portal reviews [ 40 ].…”

Section: Discussionmentioning

confidence: 99%

“…To support health information managers with a tool for comparing patient portals and defining which general type and functionalities of patient portals they need, we developed the TOPCOP taxonomy (Taxonomy of Patient Portals based on Characteristics of Patient Engagement) [ 32 ]. The need for such a patient portal taxonomy had already been stressed in a recently published Cochrane Review on the impact of patient portals [ 40 ]. The TOPCOP taxonomy is shown in Figure 1 .…”

Section: Introductionmentioning

confidence: 99%

Improvement and Evaluation of the TOPCOP Taxonomy of Patient Portals: Taxonomy-Evaluation-Delphi (TED) Approach

Glöggler¹,

Ammenwerth²

2021

J Med Internet Res

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Background Patient portals have been introduced in many countries over the last 10 years, but many health information managers still feel they have too little knowledge of patient portals. A taxonomy can help them to better compare and select portals. This has led us to develop the TOPCOP taxonomy for classifying and comparing patient portals. However, the taxonomy has not been evaluated by users. Objective This study aimed to evaluate the taxonomy’s usefulness to support health information managers in comparing, classifying, defining a requirement profile for, and selecting patient portals and to improve the taxonomy where needed. Methods We used a modified Delphi approach. We sampled a heterogeneous panel of 13 health information managers from 3 countries using the criterion sampling strategy. We conducted 4 anonymous survey rounds with qualitative and quantitative questions. In round 1, the panelists assessed the appropriateness of each dimension, and we collected new ideas to improve the dimensions. In rounds 2 and 3, the panelists iteratively evaluated the taxonomy that was revised based on round 1. In round 4, the panelists assessed the need for a taxonomy and the appropriateness of patient engagement as a distinguishing concept. Then, they compared 2 real portals with the final taxonomy and evaluated its usefulness for comparing portals, creating an initial requirement profile, and selecting patient portals. To determine group consensus, we applied the RAND/UCLA Appropriateness Method. Results The final taxonomy consists of 25 dimensions with 65 characteristics. Five new dimensions were added to the original taxonomy, with 8 characteristics added to already existing dimensions. Group consensus was achieved on the need for such a taxonomy to compare portals, on patient engagement as an appropriate distinguishing concept, and on the comprehensibility of the taxonomy’s form. Further, consensus was achieved on the taxonomy’s usefulness for classifying and comparing portals, assisting users in better understanding portals, creating a requirement profile, and selecting portals. This allowed us to test the usefulness of the final taxonomy with the intended users. Conclusions The TOPCOP taxonomy aims to support health information managers in comparing and selecting patient portals. By providing a standardized terminology to describe various aspects of patient portals independent of clinical setting or country, the taxonomy will also be useful for advancing research and evaluation of patient portals.

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“…We used a combination of keywords and subject headings related to AF, prediction models and EHR based on previous literature. [13][14][15] The search was limited to the English language and to human studies. The full search strategy is provided in online supplemental material.…”

Section: Arrhythmias and Sudden Deathmentioning

confidence: 99%

Prediction of incident atrial fibrillation in community-based electronic health records: a systematic review with meta-analysis

Nadarajah

Al-Saeed

Hurdus

et al. 2021

Heart

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ObjectiveAtrial fibrillation (AF) is common and is associated with an increased risk of stroke. We aimed to systematically review and meta-analyse multivariable prediction models derived and/or validated in electronic health records (EHRs) and/or administrative claims databases for the prediction of incident AF in the community.MethodsOvid Medline and Ovid Embase were searched for records from inception to 23 March 2021. Measures of discrimination were extracted and pooled by Bayesian meta-analysis, with heterogeneity assessed through a 95% prediction interval (PI). Risk of bias was assessed using Prediction model Risk Of Bias ASsessment Tool and certainty in effect estimates by Grading of Recommendations, Assessment, Development and Evaluation.ResultsEleven studies met inclusion criteria, describing nine prediction models, with four eligible for meta-analysis including 9 289 959 patients. The CHADS (Congestive heart failure, Hypertension, Age>75, Diabetes mellitus, prior Stroke or transient ischemic attack) (summary c-statistic 0.674; 95% CI 0.610 to 0.732; 95% PI 0.526–0.815), CHA2DS2-VASc (Congestive heart failure, Hypertension, Age>75 (2 points), Stroke/transient ischemic attack/thromboembolism (2 points), Vascular disease, Age 65–74, Sex category) (summary c-statistic 0.679; 95% CI 0.620 to 0.736; 95% PI 0.531–0.811) and HATCH (Hypertension, Age, stroke or Transient ischemic attack, Chronic obstructive pulmonary disease, Heart failure) (summary c-statistic 0.669; 95% CI 0.600 to 0.732; 95% PI 0.513–0.803) models resulted in a c-statistic with a statistically significant 95% PI and moderate discriminative performance. No model met eligibility for inclusion in meta-analysis if studies at high risk of bias were excluded and certainty of effect estimates was ‘low’. Models derived by machine learning demonstrated strong discriminative performance, but lacked rigorous external validation.ConclusionsModels externally validated for prediction of incident AF in community-based EHR demonstrate moderate predictive ability and high risk of bias. Novel methods may provide stronger discriminative performance.Systematic review registrationPROSPERO CRD42021245093.

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Adult patient access to electronic health records

Cited by 33 publications

References 108 publications

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

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

Improvement and Evaluation of the TOPCOP Taxonomy of Patient Portals: Taxonomy-Evaluation-Delphi (TED) Approach

Prediction of incident atrial fibrillation in community-based electronic health records: a systematic review with meta-analysis

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