UBC Faculty Research and Publications

Understanding attitudes to health research or “who can phone you at dinner time?” Teschke, Kay; Chu, Rachel; Marino, Suhail; Harris, Anne; Tsui, Joseph CK; Marion, Steve 2008

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Kay Teschke*, Rachel Chu*, Suhail Marino* Anne Harris*, Joseph Tsui†, Steve Marion* * Dept. of Health Care and Epidemiology † Dept. of Neurology   University of British Columbia, Vancouver, Canada Understanding Attitudes to Health Research or “Who can phone you at dinner time?”population-based research, back in the old days . . . Voters List, Medical Insurance List issued to researchers,  subjects selected followed by call to subject to invite participation letter mailed  to subject by researchers to introduce studyfollowed by call to subject to invite participation letter mailed  to subject by researchers to introduce study Voters List, Medical Insurance List issued to researchers,  subjects selected Freedom of Information and Protection of Privacy Act • expressly forbids the use of individual identifying information for contacting study subjects in 2003 . . .the new regime, scenario 1 . . . selection made by government agency letters of introduction sent from government government agent calls subject for permission to release name to researchers process turned over to researcher participationthe new regime, scenario 2 . . . • No release of names to researchers – Scenario 1 very cumbersome for government, and – does not comply with the legislationrationale for legislation change • Government personnel occasionally received angry complaints about release of contact info without permission – feeling that this was the tip of the iceberg • In contrast, researchers often hear thanks that research is being conducted • Considerable legal & ethical scholarship on privacy issues • But little literature on public opinions about participation in health researchsurvey of public opinions Four questions: 1. Are you willing to participate in health research? 2. How would the organization contacting you affect whether you felt comfortable and willing to participate in health research? 3. How would the method of selecting you affect whether you felt comfortable and willing to participate in health research? 4. Would other factors make you feel better or worse about participating in health research?Sample of 3000 Metro Vancouver and rural Vancouver Island households, drawn from electronic telephone directory file, represents ~ 50% of population of province of British Columbia Adult with next birthday asked to respond Questionnaire mailed to respondents, with return-mail envelope Non-responders followed up with 2nd and 3rd mailings, and telephone calls    1st mailing           2nd mailing 3rd mailing Total    N=854         + N=414      + N=207 = 1475 (55%) 314 = ineligible 183 = refused 1028 = no contact study methods1. Are you willing to participate in health research?2. How would the organization contacting you affect whether you felt comfortable and willing to participate in health research?3. How would the method of selecting you affect whether you felt comfortable and willing to participate in health research?4. Would any of the following make you feel better or worse about participating in health research?limitations . . . • Effect of participation rate on results unknown – main effect likely to be on overall willingness – those who answered in the 1st, 2nd, and 3rd mailings had little difference in their answers to questions 2, 3, and 4 • Effect of the fact that a university conducted this research is unknown – another sample, not reported here, was initially contacted by the Ministry of Health, and had little difference in their answers to questions 2, 3, and 4conclusions . . . • Great majority of respondents willing to take part in health research • Organization contacting participants makes a difference to participation – universities and hospitals > government >> private research firms • Modes of selection similar in effect on participation • Strongest motivators for participating are future health benefits of the researchthanks • Study participants • Research assistants – Saleema Dhalla – Hasina Jamal • Malcolm Maclure • Lianne Warren • BC Ministry of Health • BC Medical Services Foundation

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