The role of digital tools in the delivery of genomic medicine: enhancing patient-centered care.
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ABSTRACT: Purpose
Alternative models of genetic counseling are needed to meet the rising demand for genomic sequencing. Digital tools have been proposed as a method to augment traditional counseling and reduce burden on professionals; however, their role in delivery of genetic counseling is not established. This study explored the role of the Genomics ADvISER, a digital decision aid, in delivery of genomic counseling.Methods
We performed secondary analysis of 52 pretest genetic counseling sessions that were conducted over the course of a randomized controlled trial evaluating the effectiveness of the Genomics ADvISER. As part of the trial, participants were randomized to receive standard counseling or use the tool and then speak with a counselor. A qualitative interpretive description approach using thematic analysis and constant comparison was used for analysis.Results
In the delivery of genomic counseling, the Genomics ADvISER contributed to enhancing counseling by (1) promoting informed dialogue, (2) facilitating preference-sensitive deliberation, and (3) deepening personalization of decisions, all of which represent fundamental principles of patient-centered care: providing clear high-quality information, respecting patients' values, preferences, and expressed needs, and providing emotional support.Conclusion
This study demonstrates that our digital tool contributed to enhancing patient-centered care in the delivery of genomic counseling.
SUBMITTER: Shickh S
PROVIDER: S-EPMC9306004 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectivesTo conceptualize new methods for integrating patient-centered measurement into team-based care.MethodsA standalone portal was introduced into a rural clinic to support conceptualization of new methods for integration of patient-centered measurement in team-based care. The portal housed mental health-related online resources, three patient-reported measures and a self-action plan. Six providers and four patients used the portal for four months. Our data collection techniques included clinic discussions, one-on-one interviews, workflow diagrams and data generated through the portal. Analysis was supported through coding interview transcripts, looking across multiple sources of research data and research team discussions.ResultsOur research team conceptualized five team-based patient-centered measurement methods through this study. Patient-centered measurement Team Mapping offfers a technique to provide greater clarity of care-team roles and responsibilities in data collected through patient-centered measurement. Longitudinal Care Alignment can guide the care-team on incorporating patient-centered measurement into ongoing provider-patient interactions. Digital Tool Exploration can be used to evaluate a team's readiness toward digital tool adoption, and the impact of these tools. Team-based quality improvement serves as a framework for engaging teams in patient-centered quality improvement. Shared learning is a method that promotes patientprovider interactions that validate patient's perspectives of their care.ConclusionThe portal illuminated new methods for the integration of patient-centered measurement in team-based care. The first three proposed patient-centered measurement methods provides ways to assess how a clinic can incorporate patient-centered measurement methods into team-based care. The latter two methods focus on the aim of patient-generated data in which patient's values and perspectives are represented and quality of patient-centered care can be evaluated. Further testing is needed to assess the utility of these patient-centered measurement methods across different clinical settings and domains.
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Project description:Background:Person-centered care (PCC) emphasize the importance of supporting individuals' involvement in care provided and self-care. PCC has become more important in chronic care as the number of people living with chronic conditions is increasing due to the demographic changes. Digital tools have potential to support interaction between patients and healthcare providers, but empirical examples of how to achieve PCC in chronic care and the role of digital tools in this process is limited. The aim of this study was to investigate strategies to achieve PCC used by the healthcare professionals at an outpatient Rheumatology clinic (RC), the strategies' relation to digital tools, and the perceived impact of the strategies on healthcare professionals and patients.Methods:A single case study design was used. The qualitative data consisted of 14 semi-structured interviews and staff meeting minutes, covering the time period 2017-2019. The data were analyzed using conventional content analysis, complemented with document analyses.Results:Ten strategies on two levels to operationalize PCC, and three categories of perceived impact were identified. On the individual patient level strategies involved several digital tools focusing on flexible access to care, mutual information sharing and the distribution of initiatives, tasks, and responsibilities from provider to patients. On the unit level, strategies concerned involving patient representatives and individual patients in development of digital services and work practices. The roles of both professionals and patients were affected and the importance of behavioral and cultural change became clear.Conclusions:By providing an empirical example from chronic care the study contributes to the knowledge on strategies for achieving PCC, how digital tools and work practices interact, and how they can affect healthcare staff, patients and the unit. A conclusion is that the use of the digital tools, spanning over different dimensions of engagement, facilitated the healthcare professionals' interaction with patients and the patients' involvement in their own care. Digital tools complemented, rather than replaced, care practices.
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Project description: Not available
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Project description:BACKGROUND: In 2010, the Department of Veterans Affairs (VA) implemented a national patient-centered care initiative that organized primary care into interdisciplinary teams of health care professionals to provide patient-centered, continuous, and coordinated care. OBJECTIVE: We assessed the discriminate validity of the Learners' Perceptions Survey-Primary Care (LPS-PC), a tool designed to measure residents' perceptions about their primary and patient-centered care experiences. METHODS: Between October 2010 and June 2011, the LPS-PC was administered to Loma Linda University Medical Center internal medicine residents assigned to continuity clinics at the VA Loma Linda Healthcare System (VALLHCS), a university setting, or the county hospital. Adjusted differences in satisfaction ratings across settings and over domains (patient- and family-centered care, faculty and preceptors, learning, clinical, work and physical environments, and personal experience) were computed using a generalized linear model. RESULTS: Our response rate was 86% (77 of 90). Residents were more satisfied with patient- and family-centered care at the VALLHCS than at either the university or county (P < .001). However, faculty and preceptors (odds ratio [OR] = 1.53), physical (OR = 1.29), and learning (OR = 1.28) environments had more impact on overall resident satisfaction than patient- and family-centered care (OR = 1.08). CONCLUSIONS: The LPS-PC demonstrated discriminate validity to assess residents' perceptions of their patient-centered clinical training experience across outpatient primary care settings at an internal medicine residency program. The largest difference in scores was the patient- and family-centered care domain, in which residents rated the VALLHCS much higher than the university or county sites.
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Project description:ImportanceCognitive behavioral therapy for chronic pain (CBT-CP) is a safe and effective alternative to opioid analgesics. Because CBT-CP requires multiple sessions and therapists are scarce, many patients have limited access or fail to complete treatment.ObjectivesTo determine if a CBT-CP program that personalizes patient treatment using reinforcement learning, a field of artificial intelligence (AI), and interactive voice response (IVR) calls is noninferior to standard telephone CBT-CP and saves therapist time.Design, setting, and participantsThis was a randomized noninferiority, comparative effectiveness trial including 278 patients with chronic back pain from the Department of Veterans Affairs health system (recruitment and data collection from July 11, 2017-April 9, 2020). More patients were randomized to the AI-CBT-CP group than to the control (1.4:1) to maximize the system's ability to learn from patient interactions.InterventionsAll patients received 10 weeks of CBT-CP. For the AI-CBT-CP group, patient feedback via daily IVR calls was used by the AI engine to make weekly recommendations for either a 45-minute or 15-minute therapist-delivered telephone session or an individualized IVR-delivered therapist message. Patients in the comparison group were offered 10 therapist-delivered telephone CBT-CP sessions (45 minutes/session).Main outcomes and measuresThe primary outcome was the Roland Morris Disability Questionnaire (RMDQ; range 0-24), measured at 3 months (primary end point) and 6 months. Secondary outcomes included pain intensity and pain interference. Consensus guidelines were used to identify clinically meaningful improvements for responder analyses (eg, a 30% improvement in RMDQ scores and pain intensity). Data analyses were performed from April 2021 to May 2022.ResultsThe study population included 278 patients (mean [SD] age, 63.9 [12.2] years; 248 [89.2%] men; 225 [81.8%] White individuals). The 3-month mean RMDQ score difference between AI-CBT-CP and standard CBT-CP was -0.72 points (95% CI, -2.06 to 0.62) and the 6-month difference was -1.24 (95% CI, -2.48 to 0); noninferiority criterion were met at both the 3- and 6-month end points (P < .001 for both). A greater proportion of patients receiving AI-CBT-CP had clinically meaningful improvements at 6 months as indicated by RMDQ (37% vs 19%; P = .01) and pain intensity scores (29% vs 17%; P = .03). There were no significant differences in secondary outcomes. Pain therapy using AI-CBT-CP required less than half of the therapist time as standard CBT-CP.Conclusions and relevanceThe findings of this randomized comparative effectiveness trial indicated that AI-CBT-CP was noninferior to therapist-delivered telephone CBT-CP and required substantially less therapist time. Interventions like AI-CBT-CP could allow many more patients to be served effectively by CBT-CP programs using the same number of therapists.Trial registrationClinicalTrials.gov Identifier: NCT02464449.
| S-EPMC9361183 | biostudies-literature
Project description:IntroductionSocial Contexts in Medicine (SCIM) is an 18-month program that connects medical students, patients, and physicians for a longitudinal learning experience. SCIM was developed for first- and second-year medical students and seeks to supplement students' biomedical education with practical experiences built around community and continuity. The program increases students' awareness of, and skills to address, social determinants of health via a seminar series, a home visit program, and a mentoring component.MethodsThe program begins with a seminar series covering communication skills and the basics of social determinants of health, providing the foundation for successful home visits. Students are then paired with a patient for home visits to learn firsthand about the complex social factors that affect health and illness, patient participation in health care systems, and the doctor-patient relationship. In conjunction with the home visits, students obtain guidance from a physician mentor.ResultsThe SCIM program has been successful during its first 3 years at our institution. Analysis of changes in student attitudes using Crandall's Medical Student Attitudes Toward the Underserved survey has shown that SCIM students develop more positive attitudes toward the underserved than do their peers completing traditional clinic-based preceptorships. Additionally, in student surveys, the average response to the statement "I learned something valuable I would not have otherwise learned in my classes" has been 4.5 out of 5.DiscussionThese findings suggest that the SCIM model contributes to medical education by broadening students' understanding about the influence of social factors on health and disease.
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Project description:Developing animal models representating the cancer biology of advanced prostate cancer patients is challenging but essential for delivering individualized medical therapies. In an effort to develop patient derived xenograft (PDX) models, we took the metastatic site tissue from the rib lesion twice (ie, before and after enzalutamide treatment) over a twelve week period and implanted subcutaneously and under the renal capsule in immuno-deficient mice. To characterize and compare the genome and transcriptome landscapes of patient tumor tissues and the corresponding PDX models, we performed whole exome and transcriptome sequencing for metastatic tumor tissue as well as its derived PDXs. We demonstrated the feasibility of developping PDX models from patient who developed castrate-resistant prostate cancer. Our data suggested PDX models preserve the patient’s genomic and transcriptomic alterations in high fidelity, as illustrated by somatic mutation, copy number variation, gene fusion and gene expression. RNA sequencing of prostate cancer tumor tissue and derived xenograft using Illumina HiSeq 2000.
2015-06-30 | E-GEOD-70380 | biostudies-arrayexpress
Project description:Comparative effectiveness research (CER) in genomic medicine (GM) measures the clinical utility of using genomic information to guide clinical care in comparison to appropriate alternatives. We summarized findings of high-quality systematic reviews that compared the analytic and clinical validity and clinical utility of GM tests. We focused on clinical utility findings to summarize CER-derived evidence about GM and identify evidence gaps and future research needs. We abstracted key elements of study design, GM interventions, results, and study quality ratings from 21 systematic reviews published in 2010 through 2015. More than half (N = 13) of the reviews were of cancer-related tests. All reviews identified potentially important clinical applications of the GM interventions, but most had significant methodological weaknesses that largely precluded any conclusions about clinical utility. Twelve reviews discussed the importance of patient-centered outcomes, although few described evidence about the impact of genomic medicine on these outcomes. In summary, we found a very limited body of evidence about the effect of using genomic tests on health outcomes and many evidence gaps for CER to address.Genet Med advance online publication 13 April 2017.
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Project description:BackgroundLiving with type 1 diabetes is challenging, and to support self-management, repeated consultations in specialist outpatient care are often required. The emergence of new digital solutions has revolutionized how health care services can be patient centered, providing unprecedented opportunities for flexible, high-quality care. However, there is a lack of studies exploring how the use of digital patient-reported outcome measures (PROMs) for flexible specialist care affects diabetes self-management. To provide new knowledge on the relevance of using PROMs in standard care, we have designed a multimethod prospective study.ObjectiveThe overall aim of this protocol is to describe our prospective multimethod observational study designed to investigate digital PROMs in a routine specialist outpatient setting for flexible patient-centered diabetes care (DigiDiaS).MethodsThis protocol outlines the design of a multimethod prospective observational cohort study that includes data from electronic health records, self-reported questionnaires, clinical consultation field observations, and individual in-depth interviews with patients and diabetes health care personnel. All patients with type 1 diabetes at a designated outpatient clinic were invited to participate and use the digital PROM implemented in clinical care. Both users and nonusers of the digital PROM were eligible for the prospective study, allowing for a comparison of the two groups. Data were collected at baseline and after 12 months, including self-management as the primary outcome assessed using the Patient Activation Measure, along with the secondary outcomes of digital health literacy, quality of life, health economy, and clinical variables such as glycated hemoglobin.ResultsThe digital solution was implemented for routine clinical care in the department in November 2021, and data collection for the prospective study started in October 2022. As of September 6, 2023, 84.6% (186/220) of patients among those in the digital PROM and 15.5% (34/220) of patients among the nonusers have consented to participate. We expect the study to have enough participants by the autumn of 2023. With 1 year of follow-up, the results are expected by spring 2025.ConclusionsIn conclusion, a multimethod prospective observational cohort study can offer valuable insights into the relevance, effectiveness, and acceptability of digital tools using PROMs in diabetes specialist care. Such knowledge is crucial for achieving broad and successful implementation and use of these tools in a large diabetes outpatient clinic.International registered report identifier (irrid)DERR1-10.2196/52766.
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