16 research outputs found
Supporting Client and Family Engagement in Care Through the Planning and Implementation of an Online Consumer Health Portal
Web-based portals and electronic health records are making it easier for clients and families to access health information. This improved transparency and access to information has the potential to promote activation and improve outcomes, but to realize these benefits, the information needs to be valuable, meaningful, and understandable. Engagement of the end users in the planning and implementation will ensure that the product meets the needs of the consumers. The purpose of this case study is to describe the client and family engagement strategies that were employed to support the process of planning and implementing an online consumer health portal at a pediatric rehabilitation hospital to support the successful launch of this new information-sharing technology platform
Supporting Client and Family Engagement in Care Through the Planning and Implementation of an Online Consumer Health Portal
Web-based portals and electronic health records are making it easier for clients and families to access health information. This improved transparency and access to information has the potential to promote activation and improve outcomes, but to realize these benefits, the information needs to be valuable, meaningful, and understandable. Engagement of the end users in the planning and implementation will ensure that the product meets the needs of the consumers. The purpose of this case study is to describe the client and family engagement strategies that were employed to support the process of planning and implementing an online consumer health portal at a pediatric rehabilitation hospital to support the successful launch of this new information-sharing technology platform
Connecting Families to Their Health Record and Care Team: The Use, Utility, and Impact of a Client/Family Health Portal at a Children's Rehabilitation Hospital
Background: Health care portals have the potential to provide consumers with timely, transparent access to health care information and engage them in the care process.
Objective: The objective was to examine the use, utility, and impact on engagement in care and caregiver-provider communication of a client/family portal providing access to electronic health records (EHRs) and secure, 2-way e-messaging with care providers.
Methods: We conducted a prospective, mixed-methods study involving collection of caregivers’ portal usage information over a 14-month period (from portal introduction in January 2015 to the end of the study period in March 2016), a Web-based survey for caregivers administered after a minimum of 2 months’ exposure to the portal and repeated 2 months later, and focus groups or individual interviews held with caregivers and service providers at the same points in time. The survey assessed caregivers’ perceptions of the utility of and satisfaction with the EHR and e-messaging, and the portal’s impact on client engagement and perceptions of caregiver-provider communication. A total of 18 caregivers (parents) completed surveys and 6 also took part in focus groups or interviews. In addition, 5 service providers from different disciplines took part in focus groups or interviews.
Results: Although usage patterns varied, the typical pattern was a steady level of use (2.5 times a month over an average of 9 months), which is higher than typically reported use. The portal pages most frequently accessed were the home page, health record main page, appointment main page, and reports main page. The Web-based survey captured caregivers’ perceptions of usefulness of and satisfaction with the EHR and portal messaging, as well as the portal’s impact on their engagement in care and perceptions of caregiver-provider communication. The surveys indicated a moderate degree of utility of and satisfaction with the portal features, and a low but emerging impact on engagement in care and caregiver-provider communication (survey scales measuring these outcomes displayed excellent internal consistency, with Cronbach alpha ranging from .89 to .95). Qualitative themes from focus groups and interviews supported and extended the survey findings. Caregivers and service providers saw appreciable information benefits and provided recommendations to increase portal use and utility. Caregivers focused on the scope of organizational adoption of the portal system and indicated their hopes for the future of the portal, whereas service providers were concerned about how to best manage their investment of time and effort in preparing client-friendly reports and messaging clients via the portal.
Conclusions: Overall, the findings show the promise of the portal and the need for ongoing evaluation to show the portal’s ultimate potential in enhancing engagement in care and communication with care providers.Canada Health Infoway Inc. funded the demonstration project supporting the development and evaluation of Holland Bloorview Kids Rehabilitation Hospital’s client/family EHR portal. Canada Health Infoway Inc. also covered the publication costs for this article
Supporting Client and Family Engagement in Care Through the Planning and Implementation of an Online Consumer Health Portal
Web-based portals and electronic health records are making it easier for clients and families to access health information. This improved transparency and access to information has the potential to promote activation and improve outcomes, but to realize these benefits, the information needs to be valuable, meaningful, and understandable. Engagement of the end users in the planning and implementation will ensure that the product meets the needs of the consumers. The purpose of this case study is to describe the client and family engagement strategies that were employed to support the process of planning and implementing an online consumer health portal at a pediatric rehabilitation hospital to support the successful launch of this new information-sharing technology platform
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ASCT2-Targeting Antibody-Drug Conjugate MEDI7247 in Adult Patients with Relapsed/Refractory Hematological Malignancies: A First-in-Human, Phase 1 Study.
BACKGROUND: MEDI7247 is a first-in-class antibody-drug conjugate (ADC) consisting of an anti-sodium-dependent alanine-serine-cysteine transporter 2 antibody-conjugated to a pyrrolobenzodiazepine dimer. OBJECTIVE: This first-in-human phase 1 trial evaluated MEDI7247 in patients with hematological malignancies. PATIENTS AND METHODS: Adults with acute myeloid leukemia (AML), multiple myeloma (MM), or diffuse large B-cell lymphoma (DLBCL) relapsed or refractory (R/R) to standard therapies, or for whom no standard therapy exists, were eligible. Primary endpoints were safety and determination of the maximum tolerated dose (MTD). Secondary endpoints included assessments of antitumor activity, pharmacokinetics (PK), and immunogenicity. RESULTS: As of 26 March 2020, 67 patients were treated (AML: n = 27; MM: n = 18; DLBCL: n = 22). The most common MEDI7247-related adverse events (AEs) were thrombocytopenia (41.8%), neutropenia (35.8%), and anemia (28.4%). The most common treatment-related grade 3/4 AEs were thrombocytopenia (38.8%), neutropenia (34.3%), and anemia (22.4%). Anticancer activity (number of responders/total patients evaluated) was observed in 11/67 (16.4%) patients. No correlation was observed between ASCT2 expression and clinical response. Between-patient variability of systemic exposure of MEDI7247 ADC and total antibody were high (AUCinf geometric CV%: 62.3-134.2, and 74.8-126.1, respectively). SG3199 (PBD dimer) plasma concentrations were below the limit of quantification for all patients after Study Day 8. Anti-drug antibody (ADA) prevalence was 7.7%, ADA incidence was 1.9%, and persistent-positive ADA was 5.8%. CONCLUSIONS: Thrombocytopenia and neutropenia limited repeat dosing. Although limited clinical activity was detected, the dose-escalation phase was stopped early without establishing an MTD. The study was registered with ClinicalTrials.gov (NCT03106428)
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Allogeneic transplantation in elderly patients ≥65 years with non-Hodgkin lymphoma: a time-trend analysis
Allogeneic hematopoietic cell transplantation (allo-HCT) is a curative therapy for relapsed/refractory and high-risk non-Hodgkin lymphoma (NHL). However, no large studies have evaluated allo-HCT utilization in elderly NHL patients (≥65 years). Using the CIBMTR registry, we report a time-trend analysis of 727 NHL patients (≥65 years) undergoing the first allo-HCT from 2000 to 2015 in the United States (US). Study cohorts were divided by time period: 2000-2005 (N = 76) vs. 2006-2010 (N = 238) vs. 2011-2015 (N = 413). Primary outcome was overall survival (OS). Secondary outcomes included progression-free survival (PFS), relapse/progression (R/P), and non-relapse mortality (NRM). Median age at transplant, use of reduced-intensity conditioning, and graft source remained stable, while use of unrelated donors increased in the most current era. The 1-year probabilities of NRM from 2000 to 2005 vs. 2006-2010 vs. 2011-2015 were 24% vs. 19% vs. 21%, respectively (p = 0.67). Four-year probability of R/P was similar among the three cohorts: 48% (2000-2005), 40% (2006-2010), and 40% (2011-2015) (p = 0.39). The 4-year probabilities of PFS and OS (2000-2005 vs. 2006-2010 vs. 2011-2015) showed significantly improved outcomes in more recent time periods: 17% vs. 31% vs. 30% (p = 0.02) and 21% vs. 42% vs. 44% (p < 0.001), respectively. Utilization of allo-HCT increased in elderly NHL patients in the US since 2000 with improving survival outcomes
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