Dataset Information

Patient insights on features of an effective pharmacogenomics patient portal.

ABSTRACT:

Objectives

We 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.

Methods

The 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.

Results

The 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.

Conclusions

Patients 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.

SUBMITTER: Truong TM

PROVIDER: S-EPMC7539134 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundPatient-facing health information technology (HIT) tools, such as patient portals, are recognized as a potential mechanism to facilitate patient engagement and patient-centered care, yet the use of these tools remains limited in the hospital setting. Although research in this area is growing, it is unclear how the use of acute care patient portals might affect outcomes, such as patient activation.ObjectiveThe aim of this study was to describe the use of an acute care patient portal and investigate its association with patient and care partner activation in the hospital setting.MethodsWe implemented an acute care patient portal on 6 acute care units over an 18-month period. We investigated the characteristics of the users (patients and their care partners) of the patient portal, as well as their use of the portal. This included the number of visits to each page, the number of days used, the length of the user's access period, and the average percent of days used during the access period. Patient and care partner activation was assessed using the short form of the patient activation measure (PAM-13) and the caregiver patient activation measure (CG-PAM). Comparisons of the activation scores were performed using propensity weighting and robust weighted linear regression.ResultsOf the 2974 randomly sampled patients, 59.01% (1755/2974) agreed to use the acute care patient portal. Acute care patient portal enrollees were younger, less sick, less likely to have Medicare as their insurer, and more likely to use the Partners Healthcare enterprise ambulatory patient portal (Patient Gateway). The most used features of the acute care patient portal were the laboratory test results, care team information, and medication list. Most users accessed the portal between 1 to 4 days during their hospitalization, and the average number of days used (logged in at least once per day) was 1.8 days. On average, users accessed the portal 42.69% of the hospital days during which it was available. There was significant association with patient activation on the neurology service (P<.001) and medicine service (P=.01), after the introduction of HIT tools and the acute care patient portal, but not on the oncology service.ConclusionsPortal users most often accessed the portal to view their clinical information, though portal usage was limited to only the first few days of enrollment. We found an association between the use of the portal and HIT tools with improved levels of patient activation. These tools may help facilitate patient engagement and improve outcomes when fully utilized by patients and care partners. Future study should leverage usage metrics to describe portal use and assess the impact of HIT tools on specific outcome measures in the hospital setting.

Project description:BackgroundElectronic patient portals have become common and offer many potential benefits for patients' self-management of health care. These benefits could be especially important for older adult patients dealing with significant chronic illness, many of whom have caregivers, such as a spouse, adult child, or other family member or friend, who help with health care management. Patient portals commonly contain large amounts of personal information, including diagnoses, health histories, medications, specialist appointments, lab results, and billing and insurance information. Some health care systems provide proxy accounts for caregivers to access a portal on behalf of a patient. It is not well known how much and in what way caregivers are using patient portals on behalf of patients and whether patients see any information disclosure risks associated with such access.ObjectiveThe objective of this study was to examine how older adult patients perceive the benefits and risks of proxy patient portal access by their caregivers.MethodsWe conducted semistructured interviews with 10 older adult patients with chronic illness. We asked them about their relationship with their caregivers, their use of their patient portal, their caregiver's use of the portal, and their perceptions about the benefits and risks of their caregiver's use of the portals. We also asked them about their comfort level with caregivers having access to information about a hypothetical diagnosis of a stigmatized condition. Two investigators conducted a thematic analysis of the qualitative data.ResultsAll patients identified caregivers. Some had given caregivers access to their portals, in all cases by sharing log-in credentials, rather than by setting up an official proxy account. Patients generally saw benefits in their caregivers having access to the information and functions provided by the portal. Patients generally reported that they would be uncomfortable with caregivers learning of stigmatized conditions and also with caregivers (except spouses) accessing financial billing information.ConclusionsPatients share their electronic patient portal credentials with caregivers to receive the benefits of those caregivers having access to important medical information but are unaware of all the information those caregivers can access. Better portal design could alleviate these unwanted information disclosures.