2024
Social Media and Clinical Practice: What Stays the Same, What Changes, and How to Plan Ahead?
Hilty D, Myint M, Strauss K, Hoffman P, Stubbe D. Social Media and Clinical Practice: What Stays the Same, What Changes, and How to Plan Ahead? 2024, 275-295. DOI: 10.1007/978-3-031-59936-1_11.Peer-Reviewed Original ResearchHealthcare movementTelemental healthTelemedicine modelMedicine movementOnline communicationConsent processSocial mediaConsumer movementPersonal practiceDeliver qualityHealthTelemedicineDoctorsCommunication progressSignificant adjustmentCommunicationCliniciansConsentMovementGuidelinesAdjustmentAwarenessMedicine
2023
Participant Experience with Protocol Research Kidney Biopsies in the Kidney Precision Medicine Project
Victoria-Castro A, Corona-Villalobos C, Xu A, Onul I, Huynh C, Chen S, Ugwuowo U, Sarkisova N, Dighe A, Blank K, Blanc V, Rose M, Himmelfarb J, de Boer I, Tuttle K, Roberts G, Alexandrov T, Alloway R, Alpers C, Amodu A, Anderton C, Anjani K, Appelbaum P, Ardayfio J, Arora T, Ascani H, El-Achkar T, Aulisio M, Azeloglu E, Balderes O, Balis U, Bansal S, Barasch J, Bansal S, Barkell A, Barwinska D, Basit M, Basta J, Bebiak J, Beck L, Bender F, Berglund A, Bernard L, Berrouet C, Berry B, Bjornstad P, Blanc V, Blank K, Bledsoe S, Boada P, Bogen S, Bomback A, Bonevich N, Borner K, Brown K, Bueckle A, Burg A, Burgess A, Bush L, Bush W, Campbell C, Campbell T, Canetta P, Cantley L, Caprioli R, Carson J, Chen S, Chen Y, Cheng Y, Cimino J, Colona M, Conser N, Cooperman L, Crawford D, D'Agati V, Dagher P, Daniel S, Daratha K, de Boer I, Diettman S, Dighe A, Donohoe I, Dowd F, Dunn K, Eadon M, Eddy S, Elder M, Ferkowicz M, Frey R, Gadegbeku C, Gaut J, Gilliam M, Ginley B, Gisch D, Goltsev Y, Gonzalez-Vicente A, Greka A, Grewenow S, Hacohen N, Hall D, Hansen J, Hayashi L, He C, He Y, Hedayati S, Henderson J, Hendricks A, Herlitz L, Herr B, Himmelfarb J, Hodgin J, Hoofnagle A, Hoover P, Ilori T, Iyengar R, Jain S, Jain Y, Janowczyk A, Jefferson N, Johansen C, Jolly S, Kakade V, Kellum J, Kelly K, Kermani A, Kiryluk K, Knight R, Koewler R, Kretzler M, Kudose S, Lake B, Larson B, Laszik Z, Lecker S, Lee P, Lee S, Lienczewski C, Limonte C, Lu C, Lucarelli N, Lukowski J, Luo J, Lutnick B, Ma S, Madabhushi A, Madhavan S, Maikhor S, Mariani L, Marshall J, McClelland R, McMahon G, Mehl K, Ferreira R, Menez S, Menon R, Miller R, Moe O, Moledina D, Montellano R, Mooney S, Morales M, Mukatash T, Murugan R, Nam Y, Nguyen J, Nolan G, O'toole J, Oliver G, Onul I, Otto E, Palevsky P, Palmer E, Pamreddy A, Parikh C, Parikh S, Park C, Park H, Pasa-Tolic L, Patel J, Patterson N, Phuong J, Pillai A, Pinkeney R, Poggio E, Pollack A, Prasad P, Pyle L, Quardokus E, Randhawa P, Rauchman M, Record E, Rennke H, Rezaei K, Rike A, Rivera M, Roberts G, Rosas S, Rosenberg A, Rosengart M, Rovin B, Roy N, Sabatello M, Sambandam K, Sarder P, Sarkisova N, Sarwal M, Saul J, Schaub J, Schmidt I, Sealfon R, Sedor J, Sendrey D, Shang N, Shankland S, Shapiro J, Sharma K, Sharman K, Shaw M, Shi T, Shpigel A, Sigdel T, Slade A, Snyder J, Spates-Harden K, Spraggins J, Srivastava A, Steck B, Stillman I, Stutzke C, Su J, Sun J, Sutton T, Taliercio J, Tan R, Torrealba J, Toto R, Troyanskaya O, Tublin M, Tuttle K, Ugwuowo U, Valerius M, Van de Plas R, Varela G, Vazquez M, Velickovic D, Venkatachalam M, Verma A, Victoria-Castro A, Vijayan A, Corona-Villalobos C, Vinovskis C, Viswanathan V, Vita T, Waikar S, Wang A, Wang R, Wang N, Weins A, Wen N, Wen Y, Wilcox A, Williams J, Williams K, Williams M, Wilson F, Winfree S, Winters J, Wofford S, Wong A, Woodle E, Xiong Y, Xu A, Yadati P, Ye H, Yu G, Zhang D, Zhang G, Zhang K. Participant Experience with Protocol Research Kidney Biopsies in the Kidney Precision Medicine Project. Clinical Journal Of The American Society Of Nephrology 2023, 19: 202-212. PMID: 37871973, PMCID: PMC10861112, DOI: 10.2215/cjn.0000000000000334.Peer-Reviewed Original ResearchAcute kidney injuryChronic kidney diseaseKidney Precision Medicine ProjectKidney biopsyKidney diseaseMedian levelsPrecision Medicine ProjectProtocol kidney biopsiesKidney injuryMedian ageInformed consent processMedicine ProjectHispanic ethnicityPhysical activityClinical nephrologyBiopsyBiopsy procedureFuture patientsSurvey respondentsConsent formConsent processPainTranslational Health SciencesOverall satisfactionDisease
2022
Medical Student Perspectives on the Ethics of Pelvic Exams Under Anesthesia: A Multi-Institutional Study✰
Kaur K, Salwi S, McNew K, Kumar N, Millimet H, Ravichandran N, Tytus K, Zhang A, Garrett Wood A, Grimm B, Fairbrother E. Medical Student Perspectives on the Ethics of Pelvic Exams Under Anesthesia: A Multi-Institutional Study✰. Journal Of Surgical Education 2022, 79: 1413-1421. PMID: 35672245, DOI: 10.1016/j.jsurg.2022.05.015.Peer-Reviewed Original ResearchConceptsUniversity School of MedicineSchool of MedicineFemale pelvic anatomyMulti-institutional studyEmory University School of MedicineMedical studentsPelvic examinationGynecologic surgeryPelvic anatomyPelvic examPatient autonomyObservation patientsPatientsProfessional ethical normsPatient consent processMedical CollegeIndiana University School of MedicineVanderbilt University School of MedicineRoutine componentWarren Alpert Medical School of Brown UniversityAlpert Medical School of Brown UniversityConsent processEthical normsMeharry Medical CollegeEUADignity of Risk, Reemergent Agency, and the Central Thalamic Stimulation Trial for Moderate to Severe Brain Injury.
Fins J, Wright M. Dignity of Risk, Reemergent Agency, and the Central Thalamic Stimulation Trial for Moderate to Severe Brain Injury. Perspectives In Biology And Medicine 2022, 65: 307-315. PMID: 35938438, DOI: 10.1353/pbm.2022.0026.Peer-Reviewed Original Research
2020
Broadening community engagement in clinical research: Designing and assessing a pilot crowdsourcing project to obtain community feedback on an HIV clinical trial
Day S, Mathews A, Blumberg M, Vu T, Rennie S, Tucker JD. Broadening community engagement in clinical research: Designing and assessing a pilot crowdsourcing project to obtain community feedback on an HIV clinical trial. Clinical Trials 2020, 17: 306-313. PMID: 32009466, PMCID: PMC7255944, DOI: 10.1177/1740774520902741.Peer-Reviewed Original ResearchMeSH KeywordsAdolescentAdultAgedAnti-HIV AgentsAntibodies, MonoclonalClinical Trials as TopicClinical Trials, Phase I as TopicCommunity ParticipationCrowdsourcingDrug Therapy, CombinationFeedbackHIV InfectionsHumansInformed ConsentMiddle AgedPatient SelectionPilot ProjectsResearch DesignVorinostatYoung AdultConceptsHIV clinical trialsClinical trialsInformed consent formInformed consentFuture clinical trialsYears of ageCommunity engagement strategiesClinical trial teamsClinical trial researchersAntibody trialsInteractive video modulesInformed consent processTrial participationBACKGROUND/Trial recruitmentClinical teamTrial teamClinical researchTrial researchersTrialsConsent formConsent processEngagement strategiesConsentCommunity members
2018
Clinical Research Participation
Tomlin R. Clinical Research Participation. Clinical Gastroenterology 2018, 213-222. DOI: 10.1007/978-3-319-91527-2_13.ChaptersPrimary care physiciansClinical researchWillingness of patientsClinical research participationPrevention of diseaseCare physiciansInformed consent processStudy participationRare diseasePatientsStudy participantsWilson's diseaseDiseaseConsent processResearch participationParticipantsPhysiciansDiagnosisPreventionOutcomes of Operative and Nonoperative Treatment for Adult Spinal Deformity: A Prospective Multicenter, Propensity-Matched Cohort Assessment with Minimum 2-Year Follow-Up *
McLynn R, Grauer J. Outcomes of Operative and Nonoperative Treatment for Adult Spinal Deformity: A Prospective Multicenter, Propensity-Matched Cohort Assessment with Minimum 2-Year Follow-Up *. 2018, 211-215. DOI: 10.1201/9781315154053-41.Peer-Reviewed Original ResearchAdult spinal deformityNonoperative treatmentSpinal deformityOutcomes of operativePropensity-matched analysisProspective cohort studyHealth-related qualityCorrection of deformitySeverity of deformityIndividual patient decisionsImpact of disabilityHRQoL parametersNonoperative groupProspective multicenterCohort studyPropensity matchingInformed consent processPotential confoundersPatient decisionCohort assessmentBaseline levelsPropensity scoreDeformityPatientsConsent processThe Hand Surgeon Consultation Improves Patient Knowledge in a Hand Surgery Mission to Honduras
Walker ME, Chuang C, Moores CR, Webb ML, Buonocore SD, Thomson J. The Hand Surgeon Consultation Improves Patient Knowledge in a Hand Surgery Mission to Honduras. The Journal Of Hand Surgery (Asian-Pacific Volume) 2018, 23: 11-17. PMID: 29409417, DOI: 10.1142/s2424835518500017.Peer-Reviewed Original ResearchConceptsSurgeon consultationSurgical riskFellowship-trained hand surgeonsSurgical missionsHand surgery practiceStandard of careInformed consent processPatient knowledgePatients' perceptionsPatient retentionHand surgeonsPatient educationHigh-income countriesNew patientsSurgery practicePatientsDiagnosisHand practiceIndividual diagnosisConsent processScore increaseConsultationHand centerRiskCommunication difficulties
2016
Patient knowledge and expectations in endoscopic sinus surgery
Neubauer PD, Tabaee A, Schwam ZG, Francis FK, Manes RP. Patient knowledge and expectations in endoscopic sinus surgery. International Forum Of Allergy & Rhinology 2016, 6: 921-925. PMID: 27028979, DOI: 10.1002/alr.21763.Peer-Reviewed Original ResearchConceptsEndoscopic sinus surgeryPatient knowledgePreoperative counselingSinus surgeryYounger groupTertiary care medical centerEarly postoperative symptomsPatients' baseline knowledgeProspective patient surveyBaseline knowledgePostoperative symptomsMedian ageInformed consent processOngoing therapyPatient surveyPatient misconceptionsMedical CenterPatientsHealthcare providersOlder groupSurgeon's abilityPhysician rating websitesConsent processSurgerySources of information
2014
Confidentiality, Privacy, and Respect: Experiences of Female Sex Workers Participating in HIV Research in Andhra Pradesh, India
Reed E, Khoshnood K, Blankenship KM, Fisher CB. Confidentiality, Privacy, and Respect: Experiences of Female Sex Workers Participating in HIV Research in Andhra Pradesh, India. Journal Of Empirical Research On Human Research Ethics 2014, 9: 19-28. PMID: 24572080, PMCID: PMC4111636, DOI: 10.1525/jer.2014.9.1.19.Peer-Reviewed Original ResearchConceptsFemale sex workersHIV researchSex workersHIV prevention researchStudy participationPrevention researchConsent processCommunity-based organizationsResearch ethics protocolsStigmatized populationsSurvey contentEthics protocolsResearch ethicsAndhra PradeshCommunity supportStaff genderParticipants' perspectivesParticipants' experiencesContent analysis
2012
Enhancing informed consent best practices: gaining patient, family and provider perspectives using reverse simulation
Goldfarb E, Fromson JA, Gorrindo T, Birnbaum RJ. Enhancing informed consent best practices: gaining patient, family and provider perspectives using reverse simulation. Journal Of Medical Ethics 2012, 38: 546. PMID: 22522147, DOI: 10.1136/medethics-2011-100206.Peer-Reviewed Original ResearchConceptsHealthcare providersInformed consentPharmacological treatment optionsAtypical antipsychotic medicationsInformed consent discussionAdverse eventsAntipsychotic medicationTreatment optionsCollaborative carePatient retentionTherapeutic effectPsychotic symptomsClinical practicePatientsConsent discussionPatient careClinical settingProvider perspectivesPreventative measuresConsent processMedicationsDoctors' performanceFamily membersExpressed needsCareVariability in the Perception of Informed Consent for IV-tPA during Telestroke Consultation
Thomas L, Viswanathan A, Cochrane T, Johnson J, O’Brien J, McMahon M, Santimauro J, Schwamm L. Variability in the Perception of Informed Consent for IV-tPA during Telestroke Consultation. Frontiers In Neurology 2012, 3: 128. PMID: 23015805, PMCID: PMC3449489, DOI: 10.3389/fneur.2012.00128.Peer-Reviewed Original ResearchTelestroke consultationIV-tPAStroke patientsConsent processAcute ischemic stroke patientsIntravenous tissue plasminogen activatorInformed consentBenefits of tPAAcute stroke patientsIschemic stroke patientsPatients/familiesTissue plasminogen activatorInformed consent presentationAdequacy of consentEmergency physiciansClinical situationsPatientsPhysician ratersPlasminogen activatorPhysiciansConsentSubgroupsConsultationReviewersLow quality
2008
Living kidney donor informed consent practices vary between US and non-US centers
Parekh AM, Gordon EJ, Garg AX, Waterman AD, Kulkarni S, Parikh CR. Living kidney donor informed consent practices vary between US and non-US centers. Nephrology Dialysis Transplantation 2008, 23: 3316-3324. PMID: 18599559, PMCID: PMC2720811, DOI: 10.1093/ndt/gfn295.Peer-Reviewed Original ResearchConceptsTransplant centersDonor riskInformed consentKidney donorsPsychosocial evaluationNon-US respondentsWorld Transplant CongressChronic kidney diseaseUS transplant centersPotential donorsKidney donation ratesMedical complicationsDonor evaluationInformed consent processKidney diseaseConsensus statementUS CentersMedical riskTransplant professionalsDonation ratesOrgan donationConsent formPsychosocial risksSupport groupsConsent processInformed Consent for Research: Current Practices in Academic Emergency Medicine
Monico E, Larkin GL, Degutis L. Informed Consent for Research: Current Practices in Academic Emergency Medicine. Academic Emergency Medicine 2008, 15: 573-576. PMID: 18616447, DOI: 10.1111/j.1553-2712.2008.00098.x.Peer-Reviewed Original ResearchConceptsAcademic EDInformed consentHealth care personnelEmergency department environmentEmergency medicine residency training programsHalf of respondentsCare personnelClinical investigatorsSpecific research protocolsResidency training programsClinical EDsUnique barriersEmergency medicineAcademic Emergency MedicineInformed consent practicesConsent processResidents' knowledgeGraduate Medical EducationDepartment environmentFurther studiesEM residentsResearch protocolConsentPotential research subjectsAccreditation Council
2006
Views of potential research participants on financial conflicts of interest barriers and opportunities for effective disclosure
Weinfurt K, Friedman J, Allsbrook J, Dinan M, Hall M, Sugarman J. Views of potential research participants on financial conflicts of interest barriers and opportunities for effective disclosure. Journal Of General Internal Medicine 2006, 21: 901-906. DOI: 10.1007/bf02743135.Peer-Reviewed Original ResearchGroup of adultsPotential research participantsGroups of parentsFinancial interestsHeart failureHealthy childrenChronic illnessBrain tumorsHealthy adultsClinical researchConsent processAdultsGroup sessionsFocus group sessionsFocus group discussionsParticipantsFocus groupsGroupChildrenResearch participantsEffective disclosureGroup discussionsLeukemiaTumorsIllnessViews of Potential Research Participants on Financial Conflicts of Interest: Barriers and Opportunities for Effective Disclosure
Weinfurt KP, Friedman JY, Allsbrook JS, Dinan MA, Hall MA, Sugarman J. Views of Potential Research Participants on Financial Conflicts of Interest: Barriers and Opportunities for Effective Disclosure. Journal Of General Internal Medicine 2006, 21: 901-906. PMID: 16918732, PMCID: PMC1831594, DOI: 10.1111/j.1525-1497.2006.00502.x.Peer-Reviewed Original ResearchConceptsGroup of adultsPotential research participantsGroups of parentsFinancial interestsHeart failureHealthy childrenChronic illnessBrain tumorsHealthy adultsClinical researchConsent processAdultsGroup sessionsFocus group sessionsFocus group discussionsParticipantsFocus groupsGroupChildrenResearch participantsEffective disclosureGroup discussionsLeukemiaTumorsIllnessDisclosing Conflicts of Interest in Clinical Research: Views of Institutional Review Boards, Conflict of Interest Committees, and Investigators
Weinfurt KP, Friedman JY, Dinan MA, Allsbrook JS, Hall MA, Dhillon JK, Sugarman J. Disclosing Conflicts of Interest in Clinical Research: Views of Institutional Review Boards, Conflict of Interest Committees, and Investigators. The Journal Of Law, Medicine & Ethics 2006, 34: 581-591. PMID: 17144182, PMCID: PMC1850937, DOI: 10.1111/j.1748-720x.2006.00072.x.Peer-Reviewed Original ResearchMeSH KeywordsAttitude of Health PersonnelBiomedical ResearchCommunication BarriersConflict of InterestDecision MakingDisclosureEthics Committees, ResearchHuman ExperimentationHumansInformed ConsentInterviews as TopicLiability, LegalOrganizational PolicyResearch SubjectsResearch Support as TopicTrustUnited StatesConceptsFinancial interestsConflicts of interestPotential research participantsInstitutional review board chairsInvestigators' financial interestsInterests of participantsResearch participantsBenefits of disclosureLegal liabilityInterest CommitteeResearch institutionsDisclosureConsent processConflictBoard chairsGeneral agreementInstitutionsDecisionsInterestLiabilityRightsGeneral attitudesRationaleReview boardCircumstances
2001
Quality of informed consent in cancer clinical trials: a cross-sectional survey
Joffe S, Cook E, Cleary P, Clark J, Weeks J. Quality of informed consent in cancer clinical trials: a cross-sectional survey. The Lancet 2001, 358: 1772-1777. PMID: 11734235, DOI: 10.1016/s0140-6736(01)06805-2.Peer-Reviewed Original ResearchConceptsClinical trialsCancer clinical trialsFuture patientsConsent formCross-sectional surveyNon-standard treatmentAdult patientsInformed consent processTrial participantsIncremental riskProviders' beliefsMultivariate analysisPatientsUncertainty of benefitPatient consentClinical researchStandard questionnaireInformed consentTrialsConsent processTherapeutic misconceptionCancer therapyConsentParticipantsTreatment
1995
Medical Eligibility, Comprehension of the Consent Process, and Retention of Injection Drug Users Recruited for an HIV Vaccine Trial
Harrison K, Vlahov D, Jones K, Charron K, Clements M. Medical Eligibility, Comprehension of the Consent Process, and Retention of Injection Drug Users Recruited for an HIV Vaccine Trial. JAIDS Journal Of Acquired Immune Deficiency Syndromes 1995, 10: 386-390. PMID: 7552502, DOI: 10.1097/00042560-199511000-00012.Peer-Reviewed Original ResearchMeSH KeywordsAdolescentAdultAIDS VaccinesClinical Trials as TopicComprehensionConsent FormsDouble-Blind MethodEducational StatusEligibility DeterminationFemaleHIV InfectionsHumansInformed ConsentMaleMiddle AgedPatient SelectionResearch DesignResearch SubjectsSubstance Abuse, IntravenousSurveys and QuestionnairesConceptsInjection drug usersHIV vaccine trialsVaccine trialsDrug usersHuman immunodeficiency virus (HIV) infectionImmunodeficiency virus infectionPhase II trialInformed consent procedureConsent proceduresII trialVirus infectionHigh riskMedical reasonsMedical eligibilityTrialsConsent processEnrollmentFollowInfectionFalse testVisits
1994
Survey of informed consent for endoscopic retrograde cholangiopancreatography
Newton J, Hawes R, Jamidar P, Harig J, Lehman G. Survey of informed consent for endoscopic retrograde cholangiopancreatography. Digestive Diseases And Sciences 1994, 39: 1714-1718. PMID: 8050323, DOI: 10.1007/bf02087782.Peer-Reviewed Original ResearchConceptsTherapeutic ERCPProlonged hospital stayEndoscopic retrograde cholangiopancreatographyHealth care team membersGastrointestinal endoscopic proceduresPrivate practice physiciansHospital stayRetrograde cholangiopancreatographyInformed consent processPractice physiciansEndoscopic proceduresAdequate informationPatientsPhysiciansConsent processVariation of opinionERCPConsentPotential needCurrent opinionPotential riskCholangiopancreatographyPancreatitisStaySurgery
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