Diagnosis clarification by generalization to patient-friendly terms and definitions: Validation study

Mens, Hugo J. Th. van; Martens, Savine S M; Paiman, Elisabeth H.M.; Mertens, Alexander; Nienhuis, Remko; Keizer, Nicolette F. de; Cornet, Ronald

doi:10.1016/j.jbi.2022.104071

Cited by 2 publications

(2 citation statements)

References 16 publications

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“…for eHealth literacy, 80,112 ensuring that portal accounts are automatically created for all patients upon registration, 113 leveraging care settings with high proportions of vulnerable patients and significant wait down-times (e.g., emergency department), 114 using innovative methods to improve the understandability of EHI in portals, 115 providing targeted training and support, 80,112 and promoting formal proxy users. 80,116 Additionally, and as Casillas et al 97 and others 49 have recommended, EHR vendors should include diverse patient populations (e.g., non-English speaking patients) in the early phases of portal design, re-design, and feature development to ensure that they meet the needs of these users.…”

Section: Health Care Organizationsmentioning

confidence: 99%

The State-of-the-Art of Patient Portals: Adapting to External Factors, Addressing Barriers, and Innovating

Reynolds,

Cobb,

Steitz

et al. 2023

Appl Clin Inform

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Background and Objective Recent external factors—the 21st Century Cures Act and the coronavirus disease 2019 (COVID-19) pandemic—have stimulated major changes in the patient portal landscape. The objective of this state-of-the-art review is to describe recent developments in the patient portal literature and to identify recommendations and future directions for the design, implementation, and evaluation of portals. Methods To focus this review on salient contemporary issues, we elected to center it on four topics: (1) 21st Century Cures Act's impact on patient portals (e.g., Open Notes); (2) COVID-19's pandemic impact on portals; (3) proxy access to portals; and (4) disparities in portal adoption and use. We conducted targeted PubMed searches to identify recent empirical studies addressing these topics, used a two-part screening process to determine relevance, and conducted thematic analyses. Results Our search identified 174 unique papers, 74 were relevant empirical studies and included in this review. Among these papers, we identified 10 themes within our four a priori topics, including preparing for and understanding the consequences of increased patient access to their electronic health information (Cures Act); developing, deploying, and evaluating new virtual care processes (COVID-19); understanding current barriers to formal proxy use (proxy access); and addressing disparities in portal adoption and use (disparities). Conclusion Our results suggest that the recent trends toward understanding the implications of immediate access to most test results, exploring ways to close gaps in portal adoption and use among different sub-populations, and finding ways to leverage portals to improve health and health care are the next steps in the maturation of patient portals and are key areas that require more research. It is important that health care organizations share their innovative portal efforts, so that successful measures can be tested in other contexts, and progress can continue.

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Section: Health Care Organizationsmentioning

confidence: 99%

The State-of-the-Art of Patient Portals: Adapting to External Factors, Addressing Barriers, and Innovating

Reynolds,

Cobb,

Steitz

et al. 2023

Appl Clin Inform

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“…12 Two raters with a medical and terminological background validated these generalizations and considered more than 80% of the clarifications to be correct and acceptable to use in clinical practice. 15 The clarifications had not previously been evaluated by actual patient portal users in a real-life setting.…”

Section: Background and Significancementioning

confidence: 99%

Evaluation of Patient-Friendly Diagnosis Clarifications in a Hospital Patient Portal

Mens

Hannen²,

Nienhuis³

et al. 2023

Appl Clin Inform

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Background Medical data can be difficult to comprehend for patients, but only a limited number of patient-friendly terms and definitions are available to clarify medical concepts. Therefore, we developed an algorithm that generalizes diagnoses to more general concepts that do have patient-friendly terms and definitions in SNOMED CT. We implemented the generalizations, and diagnosis clarifications with synonyms and definitions that were already available, in the problem list of a hospital patient portal. Objective We aimed to assess the extent to which the clarifications cover the diagnoses in the problem list, the extent to which clarifications are used and appreciated by patient portal users, and to explore differences in viewing problems and clarifications between subgroups of users and diagnoses. Methods We measured the coverage of diagnoses by clarifications, usage of the problem list and the clarifications, and user, patient and diagnosis characteristics with aggregated, routinely available electronic health record and log file data. Additionally, patient portal users provided quantitative and qualitative feedback about the clarification quality. Results Of all patient portal users that viewed diagnoses on their problem list (n = 2,660), 89% had one or more diagnoses with clarifications. 55% of patient portal users viewed the clarifications. Users that rated the clarifications (n = 108) considered the clarifications to be of good quality on average, with a median rating per patient of 6 (interquartile range: 4 – 7; from 1 very bad to 7 very good). Users commented that they found clarifications to be clear and recognized the clarifications from their own experience, but sometimes also found the clarifications incomplete or disagreed with the diagnosis itself. Conclusions This study shows that the clarifications are used and appreciated by patient portal users. Further research and development will be dedicated to the maintenance and further quality improvement of the clarifications.

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Diagnosis clarification by generalization to patient-friendly terms and definitions: Validation study

Cited by 2 publications

References 16 publications

The State-of-the-Art of Patient Portals: Adapting to External Factors, Addressing Barriers, and Innovating

The State-of-the-Art of Patient Portals: Adapting to External Factors, Addressing Barriers, and Innovating

Evaluation of Patient-Friendly Diagnosis Clarifications in a Hospital Patient Portal

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