title: Public Interest in Medical Research Participation: Does It Matter if Patients or Community Members Have Helped Design the Study?
abstract: OBJECTIVE
  We determined national levels of public participation in medical research study design. We compared public interest in medical research participation (MRP) in studies overall, versus studies explicitly designed with public involvement.
  
  
  METHODS
  Cross-sectional household survey of US population in June 2013. Descriptive statistics estimated participation in medical research study design. Chi-square test compared levels of interest in MRP if respondent knew patients or community members helped design the study.
  
  
  RESULTS
  Of 2,048 respondents (participation rate 60%), 5% knew someone who had helped design a medical research study. There was no association between having known someone or personal participation in study design and willingness to engage in MRP. Although the overall proportion of respondents who would consider MRP initially (51%) was similar to the proportion who would consider MRP with community member involvement in study design (49%), the changes in respondents' views across the different scenarios were significantly greater than what would have been expected by chance.
  
  
  CONCLUSIONS
  We found similar levels of interest in MRP whether or not the public is involved in medical research study design. This finding may indicate that public involvement in study design, like community-based participatory research, may not affect overall rates of MRP.
authors.affiliation: Department of Veterans Affairs, VA Center for Clinical Management Research, Ann Arbor VA Healthcare System, Ann Arbor, Michigan, USA.|Department of Emergency Medicine, University of Michigan, Ann Arbor, Michigan, USA.
authors.forename: Enesha M
authors.initials: EM
authors.lastname: Cobb
authors.affiliation: Child Health Evaluation and Research (CHEAR) Unit, Division of General Pediatrics, University of Michigan, Ann Arbor, Michigan, USA.
authors.forename: Achamyeleh
authors.initials: A
authors.lastname: Gebremariam
authors.affiliation: Child Health Evaluation and Research (CHEAR) Unit, Division of General Pediatrics, University of Michigan, Ann Arbor, Michigan, USA.
authors.forename: Dianne
authors.initials: D
authors.lastname: Singer
authors.affiliation: Child Health Evaluation and Research (CHEAR) Unit, Division of General Pediatrics, University of Michigan, Ann Arbor, Michigan, USA.|Robert Wood Johnson Foundation Clinical Scholars Program, University of Michigan, Ann Arbor, Michigan, USA.|Division of General Medicine, Gerald R. Ford School of Public Policy and School of Public Health, University of Michigan, Ann Arbor, Michigan, USA.|Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA.
authors.forename: Matthew M
authors.initials: MM
authors.lastname: Davis
mesh_terms: D000293:Adolescent; D000328:Adult; D035843:Biomedical Research / Q000458:organization & administration*; D016009:Chi-Square Distribution; D003159:Community-Institutional Relations; D003430:Cross-Sectional Studies; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D010358:Patient Participation; D018579:Patient Selection; D011639:Public Opinion; D035842:Research Subjects / Q000523:psychology*; D011795:Surveys and Questionnaires; D014481:United States; D055815:Young Adult
keywords: clinical trial design; patient engagement; research participation