2020
A systematic literature review of Native American and Pacific Islanders’ perspectives on health data privacy in the United States
Taitingfong R, Bloss C, Triplett C, Cakici J, Garrison N, Cole S, Stoner J, Ohno-Machado L. A systematic literature review of Native American and Pacific Islanders’ perspectives on health data privacy in the United States. Journal Of The American Medical Informatics Association 2020, 27: 1987-1998. PMID: 33063114, PMCID: PMC7727344, DOI: 10.1093/jamia/ocaa235.Peer-Reviewed Reviews, Practice Guidelines, Standards, and Consensus Statements
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