Dataset Information

Assessment of Patient Knowledge and Perceptions of Pharmacogenomics Before and After Using a Mock Results Patient Web Portal.

ABSTRACT: Our objective was to build a mock pharmacogenomic (PGx) patient portal and assess its ability to disseminate test results and information to patients. The YourPGx Portal delivered four sample PGx results (omeprazole, simvastatin, clopidogrel, and codeine). We hosted two study groups to assess patient knowledge and perceptions of PGx before and after accessing the portal. Ten PGx-tested and 10 traditional care participants were included (average 61 years, 60% women, 50% African American, and 55% had a bachelor's/advanced degree). Participants scored significantly higher on the post-test compared with the pre-test, with no significant differences between baseline scores or score change between the groups. Patient perceptions also improved after accessing the portal-more patients wanted their providers to have access to test results, and more patients would encourage family/friends to get PGx testing. Patients would share their test results with their healthcare providers, spouse/partner, and family; none would share results with their friends or social media. Almost all patients (95%) said the portal was easy to use and 65% said it was easy to understand. In this pilot study, patients' knowledge and perceptions of PGx improved after accessing the YourPGx Portal.

SUBMITTER: Truong TM

PROVIDER: S-EPMC6951853 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Assessment of Patient Knowledge and Perceptions of Pharmacogenomics Before and After Using a Mock Results Patient Web Portal.

Truong Tien M TM Lipschultz Elizabeth E Danahey Keith K Schierer Emily E Ratain Mark J MJ O'Donnell Peter H PH

Clinical and translational science 20190928 1

Our objective was to build a mock pharmacogenomic (PGx) patient portal and assess its ability to disseminate test results and information to patients. The YourPGx Portal delivered four sample PGx results (omeprazole, simvastatin, clopidogrel, and codeine). We hosted two study groups to assess patient knowledge and perceptions of PGx before and after accessing the portal. Ten PGx-tested and 10 traditional care participants were included (average 61 years, 60% women, 50% African American, and 55% ...[more]

PMID: 31490020

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Project description:BackgroundIn the United States, attention has been focused on "open notes" and "open results" since the Office of the National Coordinator for Health Information Technology implemented the 21st Century Cures Act Final Rule on information blocking. Open notes is an established best practice, but open results remains controversial, especially for diseases associated with stigma, morbidity, and mortality. Coronavirus disease 2019 (COVID-19) is associated with all three of these effects and represents an ideal disease for the study of open results for sensitive test results.ObjectivesThis study evaluates patient perspectives related to receiving COVID-19 test results via an online patient portal prior to discussion with a clinician.MethodsWe surveyed adults who underwent COVID-19 testing between March 1, 2020 and October 21, 2020 who agreed to be directly contacted about COVID-19-related research about their perspectives on receiving test results via a patient portal. We evaluated user roles (i.e., patient vs. care partner), demographic information, ease of use, impact of immediate release, notification of results, impact of viewing results on health management, and importance of sharing results with others.ResultsUsers were mostly patients themselves. Users found the portal easy to use but expressed mixed preferences about the means of notification of result availability (e.g., email, text, or phone call). Users found immediate access to results useful for managing their health, employment, and family/childcare. Many users shared their results and encouraged others to get tested. Our cohort consisted mostly of non-Hispanic white, highly educated, English-speaking patients.ConclusionOverall, patients found open results useful for COVID-19 testing and few expressed increased worries from receiving their results via the patient portal. The demographics of our cohort highlight the need for further research in patient portal equity in the age of open results.

Project description:ObjectivesWe built a novel mock pharmacogenomics web portal to deliver pharmacogenomic information and results to patients. Utilizing a patient focus group, we then sought to understand patient insights on desired features of an effective pharmacogenomics patient portal.MethodsThe mock YourPGx Portal delivered four sample pharmacogenomic results (omeprazole, simvastatin, clopidogrel, and codeine). Patients from our existing institutional, prospective pharmacogenomics implementation study were recruited to pilot the mock portal and then asked to participate in a focus group discussion led by two facilitators. All patients had been previously genotyped, but none had been directly provided access to their own genotyping results and none had previously used the YourPGx portal. The focus group discussion explored nine domains: (1) factors influencing drug response, (2) concerns about drug effects, (3) understanding of genomics and pharmacogenomics, (4) reasons to undergo pharmacogenomic testing, (5) sources of pharmacogenomic information for patient education, (6) attributes of pharmacogenomic sources of information, (7) considerations about privacy and personal pharmacogenomic information, (8) sharing of pharmacogenomic information, and (9) features of an effective patient portal.ResultsThe median age of patients (n = 10) was 65.5 years old (range 38-72), 70% female, 50% Caucasian/30% Black, and 60% held a bachelor/advanced degree. When asked about resources for seeking pharmacogenomic information, patients preferred consulting their providers first, followed by self-education, then using information provided by university research organizations. A theme emerged regarding attributes of these sources, namely a desire for understandability and trust. Patients said that the effectiveness of a pharmacogenomics patient portal is improved with use of symbolisms/graphics and clear and concise content. Effective use of colors, quantifying information, consistency, and use of layperson's language were additional important facets. Patients communicated the appeal of secured phone/app-enabled access and said that they would desire linking to their electronic medical records to allow sharing of information with different members of their healthcare team.ConclusionsPatients named providers as their primary source of pharmacogenomic information, but a pharmacogenomics patient portal that is carefully constructed to incorporate desired features may be a favorable tool to effectively deliver pharmacogenomic information and results to patients.

Project description:PURPOSE:The purpose was to identify factors associated with older glaucoma patients' knowledge of, perceptions of, and predispositions for telemedicine use. MATERIALS AND METHODS:Established patients age 60 years and above with a diagnosis of primary open-angle glaucoma, glaucoma suspect, or ocular hypertension followed by a glaucoma fellowship-trained ophthalmologist were enrolled in the study at an academic, urban, tertiary referral eye clinic. Enrolled patients were administered a Life Space Questionnaire (LSQ), scored 0 to 9, and Preferences for Telemedicine Questionnaire (PTQ), a Likert scale validated tool. χ testing analyzed PTQ responses by age, race, education, employment status, LSQ score, and distance traveled from home address to clinic. A Mann-Whitney U test was used to compare PTQ responses by visual field index and visual acuity for the better and worse eye. RESULTS:Of 110 patients enrolled, 71% of patients agreed or were neutral to receiving telediagnosis and 74% of patients agreed or were neutral to receiving teleintervention. Patients aged 60 to 69 years compared with those 70 and above had significantly greater knowledge about types of telemedicine: telediagnosis (53% vs. 31%, P=0.02), teleintervention (49% vs. 24%, P=0.006), teletriage (80% vs. 47%, P=0.0004), and telemonitoring (55% vs. 27%, P=0.003). Patients of European descent had significantly more knowledge about teletriage compared with those of non-European descent (72% vs. 53%, P=0.04). Patients with more education (>high school) compared with those with less education (≤high school) had more knowledge about telemedicine (39% vs. 16%, P=0.007) and all the uses of it: telediagnosis (61% vs. 45%, P<0.001), teleintervention (54% vs. 14%, P<0.001), teletriage (86% vs. 35%, P<0.001), and telemonitoring (59% vs. 18%, P=0.001). Patients with a LSQ score ≥6, meaning they traveled a greater distance from home in the previous 3 days, displayed significantly more knowledge about telediagnosis (49% vs. 25%, P=0.02), teleintervention (43% vs. 19%, P=0.01), and telemonitoring (47% vs. 25%, P=0.03) than those with an LSQ<6. Responses to the PTQ were not significantly different by distance traveled. CONCLUSIONS:Knowledge of telemedicine was variable but between one third and one half of patients had favorable attitudes toward using telemedicine for glaucoma care.

Dataset Information

Assessment of Patient Knowledge and Perceptions of Pharmacogenomics Before and After Using a Mock Results Patient Web Portal.

Publications

Assessment of Patient Knowledge and Perceptions of Pharmacogenomics Before and After Using a Mock Results Patient Web Portal.

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