MyLynch: A Patient-Facing Clinical Decision Support Tool for Genetically-Guided Personalized Medicine in Lynch Syndrome.
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ABSTRACT:
SUBMITTER: Knapp ST
PROVIDER: S-EPMC9856567 | biostudies-literature | 2023 Jan
REPOSITORIES: biostudies-literature
Publications
MyLynch: A Patient-Facing Clinical Decision Support Tool for Genetically-Guided Personalized Medicine in Lynch Syndrome.
Knapp Stephen T ST Revette Anna A Underhill-Blazey Meghan M Stopfer Jill E JE Ukaegbu Chinedu I CI Poulin Cole C Parenteau Madison M Syngal Sapna S Bae Eunchan E Bickmore Timothy T Hampel Heather H Idos Gregory E GE Parmigiani Giovanni G Yurgelun Matthew B MB Braun Danielle D
Cancers 20230106 2
Lynch syndrome (LS) is a hereditary cancer susceptibility condition associated with varying cancer risks depending on which of the five causative genes harbors a pathogenic variant; however, lifestyle and medical interventions provide options to lower those risks. We developed MyLynch, a patient-facing clinical decision support (CDS) web application that applies genetically-guided personalized medicine (GPM) for individuals with LS. The tool was developed in R Shiny through a patient-focused ite ...[more]
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Project description:ObjectiveTo review the literature on clinical decision support (CDS) for genetically guided personalized medicine (GPM).Materials and methodsMEDLINE and Embase were searched from 1990 to 2011. The manuscripts included were summarized, and notable themes and trends were identified.ResultsFollowing a screening of 3416 articles, 38 primary research articles were identified. Focal areas of research included family history-driven CDS, cancer management, and pharmacogenomics. Nine randomized controlled trials of CDS interventions for GPM were identified, seven of which reported positive results. The majority of manuscripts were published on or after 2007, with increased recent focus on genotype-driven CDS and the integration of CDS within primary clinical information systems.DiscussionSubstantial research has been conducted to date on the use of CDS to enable GPM. In a previous analysis of CDS intervention trials, the automatic provision of CDS as a part of routine clinical workflow had been identified as being critical for CDS effectiveness. There was some indication that CDS for GPM could potentially be effective without the CDS being provided automatically, but we did not find conclusive evidence to support this hypothesis.ConclusionTo maximize the clinical benefits arising from ongoing discoveries in genetics and genomics, additional research and development is recommended for identifying how best to leverage CDS to bridge the gap between the promise and realization of GPM.
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Project description:BackgroundHigh blood pressure (HBP) affects nearly half of adults in the United States and is a major factor in heart attacks, strokes, kidney disease, and other morbidities. To reduce risk, guidelines for HBP contain more than 70 recommendations, including many related to patient behaviors, such as home monitoring and lifestyle changes. Thus, the patient's role in controlling HBP is crucial. Patient-facing clinical decision support (CDS) tools may help patients adhere to evidence-based care, but customization is required.ObjectiveOur objective was to understand how to adapt CDS to best engage patients in controlling HBP.MethodsWe conducted a mixed methods study with two phases: (1) survey-guided interviews with a limited cohort and (2) a nationwide web-based survey. Participation in each phase was limited to adults aged between 18 and 85 years who had been diagnosed with hypertension. The survey included general questions that assessed goal setting, treatment priorities, medication load, comorbid conditions, satisfaction with blood pressure (BP) management, and attitudes toward CDS, and also a series of questions regarding A/B preferences using paired information displays to assess perceived trustworthiness of potential CDS user interface options.ResultsWe conducted 17 survey-guided interviews to gather patient needs from CDS, then analyzed results and created a second survey of 519 adults with clinically diagnosed HBP. A large majority of participants reported that BP control was a high priority (83%), had monitored BP at home (82%), and felt comfortable using technology (88%). Survey respondents found displays with more detailed recommendations more trustworthy (56%-77% of them preferred simpler displays), especially when incorporating social trust and priorities from providers and patients like them, but had no differences in action taken.ConclusionsRespondents to the survey felt that CDS capabilities could help them with HBP control. The more detailed design options for BP display and recommendations messaging were considered the most trustworthy yet did not differentiate perceived actions.
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Project description:BackgroundIn some healthcare systems, it is common that patients address laboratory test centers directly without a physician's recommendation. This practice is widely spread in Russia with about 28% of patients who visiting laboratory test centers for diagnostics. This causes an issue when patients get no help from the physician in understanding the results. Computer decision support systems proved to efficiently solve a resource consuming task of interpretation of the test results. So, a decision support system can be implemented to rise motivation and empower the patients who visit a laboratory service without a doctor's referral.MethodsWe have developed a clinical decision support system for patients that solves a classification task and finds a set of diagnoses for the provided laboratory tests results. The Wilson and Lankton's assessment model was applied to measure patients' acceptance of the solution.ResultsA first order predicates-based decision support system has been implemented to analyze laboratory test results and deliver reports in natural language to patients. The evaluation of the system showed a high acceptance of the decision support system and of the reports that it generates.ConclusionsDetailed notification of the laboratory service patients with elements of the decision support is significant for the laboratory data management, and for patients' empowerment and safety.
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2024-03-01 | GSE246236 | GEO
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Project description:BackgroundApplied pharmacogenomics presents opportunities for improving patient care through precision medicine, particularly when paired with appropriate clinical decision support (CDS). However, a lack of patient resources for understanding pharmacogenomic test results may hinder shared decision-making and patient confidence in treatment. We sought to create a patient pharmacogenomics education and results delivery platform complementary to a CDS system to facilitate further research on the relevance of patient education to pharmacogenomics.MethodsWe conceptualized a model that extended the data access layer of an existing institutional CDS tool to allow for the pairing of decision supports offered to providers with patient-oriented summaries at the same level of phenotypic specificity. We built a two-part system consisting of a secure portal for patient use and an administrative dashboard for patient summary creation. The system was built in an ASP.NET and AngularJS architecture, and all data was housed in a HIPAA-compliant data center, with PHI secure in transit and at rest.ResultsThe YourPGx Patient Portal was deployed on the institutional network in June 2019. Fifty-eight unique patient portal summaries have been written so far, which can provide over 4500 results modules to the pilot population of 544 patients. Patient behavior on the portal is being logged for further research.ConclusionsTo our knowledge, this is the first automated system designed and deployed to provide detailed, personalized patient pharmacogenomics education complementary to a clinical decision support system. Future work will expand upon this system to allow for telemedicine and patient notification of new or updated results.
| S-EPMC8390782 | biostudies-literature
Project description:Rationale & objectivePatient education and decision support tools could facilitate decisions around the timing of antiviral therapy in patients living with both hepatitis C virus (HCV) infection and chronic kidney disease (CKD). We previously developed a tool through the HELP (Helping Empower Liver and Kidney Patients) study. This article evaluates the preliminary efficacy and usability of the tool among participants with both HCV infection and CKD.Study designPre-post study pilot evaluation.Setting & participantsParticipants were at least 18 years old, were English speaking, and had a diagnosis of chronic HCV infection and CKD; they were seen in CKD clinics, dialysis units, and/or hepatology and liver transplantation clinics.InterventionElectronic patient decision support tool.OutcomesParticipants' change in knowledge, certainty about choice, decision self-efficacy, patients' treatment preferences, and tool usability.Results70 participants were recruited; 56 of 70 (80.0%) completed study procedures. Nearly all (51/56; 91.1%) requested paper-based study procedures despite the electronic design of the tool. Participants reported that they were most worried about the following treatment factors: (1) cost of drugs to treat HCV infection, (2) how their HCV infection affected their CKD, and (3) wait times for a kidney transplant. After using the decision tool, participants had significantly higher HCV infection and CKD knowledge (mean posttest percent of questions answered correctly = 65.74% vs pretest percent of questions answered correctly = 53.44%; P < 0.001) and more certainty about choice (mean posttest = 3.13 vs pretest = 2.65; P = 0.05). There were no significant changes in decision self-efficacy (mean posttest = 86.62 vs pretest = 84.68; P = 0.48).LimitationsSingle-site pilot study to explore preliminary tool efficacy and usability.ConclusionsThis study suggests that a decision tool may support informed patient-centered choices among patients with HCV infection and CKD. Future studies should evaluate ways to improve care decisions in a larger sample using both paper-based and electronic materials.FundingMerck & Co, Inc, Kenilworth, NJ.Trial registrationRegistered at clinicaltrials.gov with study number NCT03426787.
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