Careyva, Beth, MD

Chang, Jerry, BS

Curtis, Charity, MPH

Johnson, Melanie B, MPA

Kurt, Anita, PhD, RN

Liu, Henry, MD

Santiago, Claudia P., BA

Staubinger, Kathleen, RN, BSN

Stello, Brian, MD

Winter, Alex, BS

York, Wendy H., BS, MA

English

Lehigh Valley Health Network: LVHN Scholarly Works

Lehigh Valley Health NetworkLVHN Scholarly WorksDepartment of Family MedicineParticipation in Clinical Research: A ThoroughExplanation in Their Own Language Helps FamilyMedicine Patients Decide.Anita Kurt PhD, RNLehigh Valley Health Network, Anita.Kurt@lvhn.orgCharity Curtis MPHLehigh Valley Health NetworkMelanie B. Johnson MPALehigh Valley Health Network, Melanie_B.Johnson@lvhn.orgHenry Liu MDLehigh Valley Health Network, Henry.Liu@lvhn.orgBeth Careyva MDLehigh Valley Health Network, beth_a.careyva@lvhn.orgSee next page for additional authorsFollow this and additional works at: https://scholarlyworks.lvhn.org/family-medicinePart of the Medical Specialties CommonsThis Presentation is brought to you for free and open access by LVHN Scholarly Works. It has been accepted for inclusion in LVHN Scholarly Works byan authorized administrator. For more information, please contact LibraryServices@lvhn.org.Published In/Presented AtKurt, A., Curtis, C., Johnson, M., Lium H., Careyva, B. A., Chang, J., Winter, A., Santiago, C. P., York, W. H., Straubinger, K., Stello, B.(2015, June 29). Participation in Clinical Research: A Thorough Explanation in Their Own Language Helps Family Medicine PatientsDecide. Presented at the 2015 NAPCRG PBRN conference in Bethesda, MD.AuthorsAnita Kurt PhD, RN; Charity Curtis MPH; Melanie B. Johnson MPA; Henry Liu MD; Beth Careyva MD;Jerry Chang BS; Alex Winter BS; Claudia P. Santiago BA; Wendy H. York BS, MA; Kathleen Staubinger RN,BSN; and Brian Stello MDThis presentation is available at LVHN Scholarly Works: https://scholarlyworks.lvhn.org/family-medicine/260© 2015 Lehigh Valley Health Network Participation in Clinical Research: What Influences Primary Care Patients? Melanie B. Johnson MPA Disclosure of Commercial Relationship(s) None of the authors listed below have any financial relationship to disclose.  ▪ Anita Kurt, PhD, RN ▪ Charity Curtis, MPH  ▪ Melanie B. Johnson, MPA  ▪ Henry Liu, MD  ▪ Beth A. Careyva, MD  ▪ Jerry Chang  ▪ Alex Winter  ▪ Claudia P. Santiago, BA   ▪ Wendy H. York, BS, MA  ▪ Kathleen Straubinger, RN, BSN   ▪ Brian Stello MD  ▪ This study is grant funded by the Anne and Carl Anderson Trust.    Lehigh Valley (LV) PBRN  • Supported by Lehigh Valley Health Network  • Established 2003 • 800,000 people in primary service area • 250 primary care physicians • 90 practices • Diverse ownership models Background ▪ Enrollment in Clinical Research is difficult in almost all areas of medicine.  ▪ FDA guideline recommending sex-specific analyses.  ▪Women and under-served populations are under-represented in clinical research, despite improvements.    Objective To identify factors that influence primary care patients’ participation in clinical research. Methods ▪ A validated, anonymous 44- question IRB approved survey in four primary care practices.  ▪ Offered in English, Spanish, Traditional Chinese and Simplified Chinese.  ▪ Autonomous patients >18 years of age  Hypotheses ▪ Patients with higher education and socio-economic status are more open to participate.  ▪ Distrust in doctors plays a major role in preventing patient participation.    ▪ Patients would be more likely to participate if additional resources were made available.  Limitations ▪ Interim analysis ▪ Selection bias ▪ Convenience sample  ▪ Incomplete surveys   Interim Analysis Method ▪ Comparisons made by Fisher’s Exact test and Chi-square, as appropriate.  ▪ Logistic regression analysis to compare levels of education and income to participation.  Participants ▪ N= 432 ▪ 70% female ▪ 91% had not participated in prior clinical research  Participant-Reported Demographics  Caucasion 65% Hispanic (free text) 13% Black or African American 8% Missing 6% Asian 4% Multi-Racial 3% Native Hawaiian or PI <1% American Indian or Alaskan native <1% Other 1% Prior Research Participation     Education Distribution       Income Distribution Motivators to Research Participation- Race  010203040506070Non-HispanicCaucasianMinorityMotivators to Research Participation- Gender  010203040506070WomenMenBarriers to Research Participation- Race 010203040506070Non-HispanicCaucasianMinorityBarriers to Research Participation- Gender 010203040506070WomenMenBarriers to Research Participation 010203040506070Prior ParticipationNo Prior ParticipationResources Aiding in Decision-Making 010203040506070WrittenMaterialsDVDs orElectronicMaterialsPatientMentorSupportGroupMaterials inOwnLanguageMedicalInterpreterNon-HispanicCaucasianMinorityResources Aiding in Decision-Making 010203040506070WrittenMaterialsDVDs orElectronicMaterialsPatientMentorSupportGroupMaterialsin OwnLanguageMedicalInterpreterWomenMenResults      No association between income or education levels and research participation  Written materials in native language  Participant mentor or support group resources  Time and follow-up are barriers   Financial Incentive is not a motivator in participation.      Discussion ▪Know your community  ▪Expand resources to accommodate and encourage participation beyond English-speaking subjects  ▪Foster frequent and thorough communications among physician, patient, family and researcher  Share your stories ▪ Challenges or successes in recruiting diverse populations?  ▪ Participant education, resources and materials?  ▪ Capitalizing on doctor-patient relationship in recruitment and retention?    

Participation in Clinical Research: A Thorough Explanation in Their Own Language Helps Family Medicine Patients Decide.

https://scholarlyworks.lvhn.org/cgi/viewcontent.cgi?article=1269&context=family-medicine

Participation in Clinical Research: A Thorough Explanation in Their Own Language Helps Family Medicine Patients Decide.

Abstract

Similar works

Full text

Available Versions

Lehigh Valley Health Network: LVHN Scholarly Works