2018
A Novel Stakeholder Engagement Approach for Patient-centered Outcomes Research
Kim K, Khodyakov D, Marie K, Taras H, Meeker D, Campos H, Ohno-Machado L. A Novel Stakeholder Engagement Approach for Patient-centered Outcomes Research. Medical Care 2018, 56: s41-s47. PMID: 30074950, PMCID: PMC6143220, DOI: 10.1097/mlr.0000000000000790.Peer-Reviewed Original ResearchConceptsClinical Data Research NetworkPatient-centered outcomes researchEngagement of patientsOutcomes research studiesConditions of focusStakeholder advisory boardPatient-centered outcomes research studiesKawasaki diseaseHeart failurePatient advocatesPatientsClinical sitesOutcomes researchSignificant differencesHealth researchCliniciansResearch NetworkResearch prioritiesSetting of prioritiesEngagement strategiesAdvisory BoardFavorable opinionObesityEngagement principlesDisease
2016
Comparative analysis of stakeholder experiences with an online approach to prioritizing patient-centered research topics
Khodyakov D, Grant S, Meeker D, Booth M, Pacheco-Santivanez N, Kim K. Comparative analysis of stakeholder experiences with an online approach to prioritizing patient-centered research topics. Journal Of The American Medical Informatics Association 2016, 24: 537-543. PMID: 28011596, PMCID: PMC7651951, DOI: 10.1093/jamia/ocw157.Peer-Reviewed Original ResearchConceptsStudy participationPatient/caregiver experienceKawasaki diseaseHeart failureRating roundsCaregivers' experiencesProfessional stakeholdersMultivariate modelConvenience samplePatientsDelphi panelCliniciansPerson meetingsResearch prioritizationSelf-reported willingnessLittle evidenceParticipants' experiencesStakeholder experiencesObesityDiseaseExperience index
2014
pSCANNER: patient-centered Scalable National Network for Effectiveness Research
Ohno-Machado L, Agha Z, Bell D, Dahm L, Day M, Doctor J, Gabriel D, Kahlon M, Kim K, Hogarth M, Matheny M, Meeker D, Nebeker J, team T, Resnic F, Khodyakov D, Armstead L, Nagler T, Morley S, Anderson N, Cooper D, Phillips D, Heber D, Li Z, Ong M, Patel A, Zachariah M, Burns J, Daniels L, Doan S, Farcas C, Germann-Kurtz R, Jiang X, Kim H, Paul P, Taras H, Tremoulet A, Wang S, Zhu W, Berman D, Rizk-Jackson A, D’Arcy M, Kesselman C, Knight T, Pearlman L, Heidenreich P, Rifkin D, Stepnowsky C, Zamora T, DuVall S, Frey L, Scehnet J, Sauer B, Facelli J, Gouripeddi R, Denton J, FitzHenry F, Fly J, Messina V, Minter F, Nookala L, Sullivan H, Speroff T, Westerman D. pSCANNER: patient-centered Scalable National Network for Effectiveness Research. Journal Of The American Medical Informatics Association 2014, 21: 621-626. PMID: 24780722, PMCID: PMC4078293, DOI: 10.1136/amiajnl-2014-002751.Peer-Reviewed Original ResearchConceptsInitial use caseCommon data modelPatient Centered Outcomes Research InstituteHealth information exchange dataComputing infrastructuresFederated networkUse casesDistributed systemData modelComputation modelExchange dataPatient-powered research networksCommunity-based outpatient clinicsNetworkCongestive heart failureOutcomes Research InstituteEffectiveness researchAsynchronous modeHealth services researchersKawasaki diseaseHeart failureOutpatient clinicVA InformaticsAmbulatory careNational network