1 / 14

Assessing Community Consultation in NETT: An Ethics Study

Assessing Community Consultation in NETT: An Ethics Study. Rebecca D. Pentz, PhD Jeremy Sugarman, MD, MPH, MA Kevin Weinfurt,PhD Neal Dickert, MD, PhD. Jeremy Sugarman. Harvey M. Meyerhoff Professor of Bioethics

tricia
Download Presentation

Assessing Community Consultation in NETT: An Ethics Study

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. Assessing Community Consultation in NETT: An Ethics Study Rebecca D. Pentz, PhD Jeremy Sugarman, MD, MPH, MA Kevin Weinfurt,PhD Neal Dickert, MD, PhD

  2. Jeremy Sugarman Harvey M. Meyerhoff Professor of Bioethics and MedicineAcademic DegreesMD Duke, 1986; MPH JHU, 1992; MA Georgetown, 1983

  3. Kevin Weinfurt Deputy Director, Center for Clinical and Genetic EconomicsDuke Clinical Research Institute Associate Professor of Psychiatry and Behavioral SciencesDuke University School of Medicine Associate Professor of Psychology and NeuroscienceDuke University

  4. Neal Dickert, MD, PhD • In-coming cardiology fellow at Emory, will work on this project during fellowship. • Academic degrees: • MD- Johns Hopkins (2006), • PhD- Bloomberg School of Public Health (2006, Health Policy and Bioethics) • Relevant research • Doctoral dissertation on ethics of research in emergency settings • Collaborated with Sugarman on Community Consultation • Two-year fellowship focusing on ethics of clinical research- NIH Dept of Clinical Bioethics (1997-1999)

  5. Aims Aim 1:To assess the effectiveness and quality of different methods of community consultation (CC). Aim 2:To develop an instrument to assess quality of CC.

  6. Why Focus on Community Consultation? • Particularly confusing – who is the community? • Who count as true representatives of a community? • What numbers or types of activities should be undertaken? • How should effectiveness be measured? • What methods of consulting are best? • How should the IRB use the information?

  7. Two-Stage Design 1. During RAMPART, collect descriptive data. 2. During ProTECT, prospectively study 4-5 IRBs that use different CC methods. Test a CC evaluation measure.

  8. Overview of RAMPART Phase BEFORE RAMPART • In depth interviews with IRB personnel.

  9. Overview of RAMPART Phase During CC • Pentz attends and describes all CC meetings in Atlanta. • Pentz distributes a survey to CC participants n Atlanta. • Pentz tracks IRB’s response to CC in ATL

  10. Overview of RAMPART Phase After IRB approval and CC • Web Survey to NETT IRB chairs, administrators • Web Survey to All NETT Investigators

  11. Plans for ProTECT 1.Based on the results obtained during RAMPART, we will identify 4-5 IRBs to study prospectively, choosing IRBs that use a diversity of methods and are diverse geographically.

  12. Plans for ProTECT 2. We will work with one IRB who expressed dissatisfaction with its method to develop CC using formative research used successfully in AIDS/HIV CC Formative research involves in depth interviewing of potential participants assessing their willingness to enroll and the reasons for or against enrollment. Taylor and Sugarman Ann Rheum Dis 2007:66:542-544

  13. Plans for ProTECT 3.Based on the data gathered during RAMPART, we will design assessment methods to assess the IRB’s CC methods One method will be an instrument for assessing quality of CC.

  14. Questions and Discussion

More Related