Kiran Pohar Manhas, Stacey Page, Nicole Letourneau, and Suzanne Tough Alberta Centre for Child, Family & Community Research University of Calgary, Alberta, Canada April 4, 2014 Big Data 2014 Conference Melbourne, Australia Parents TRUST the data sharing trajectory when… Account -ability Parents perspectives DIVERGE around… Children Process Protections Secondary Researchers “The value of data lies in their use.” Committee on Transborder Flow of Scientific Data. Bits of power: Issues in global access to scientific data, National Research Council, 1997. http://www.shutterstock.com/pic-80864542/stock-photo-many-small-ideas-equal-a-big-one-illustrated-with-chalk-drawn-light-bulbs-ona-blackboard.html Literature emphasizes Adults (public + research) Biological data http://www.cartoonstock.com/directory/d/data_protection.asp Calgary, Alberta, Canada http://www.calgaryeconomicdevelopment.com/research/demographicspopulation/overview Prospective, multiyear epidemiologic studies Large samples Long-term follow Wealth of data on children and families (incl parents) Physical Demographic Parenting Emotional Health Nutrition Social Adverse events Sleep Developmental Environment Genetics 2008 - 2014 All Our Babies (AOB) Alberta Pregnancy Outcomes & Nutrition (APrON) Time-points: Pregnancy (26 wks, 32 wks), Postpartum (3-4 mos), and Childhood (1,2 & 3 yrs old) 2014 Forward The Alberta Birth Cohort Dataset • 5500 mom-baby pairs • 5 years of follow-up • Questionnaire + biological data The Child Data Centre of Alberta (CDCA) To describe birth cohort parent values and preferences related to the long-term use, and continued access, of their and their child’s individual, non-biological data held in research repositories, generally and the CDCA specifically AOB & APRON PARENT PARTICIPANTS (N = 37) 4 Focus Groups 19 Interviews Values & Preferences Data sharing benefits & risks CDCA Governance Consent Models When, and why, parents trust data sharing (concept and process trajectory)? What areas are contentious amongst parents? Accountability Process Protections “I think that it’s a good idea, that the data be available to share because I think that it takes a lot of time to collect the information and [sic] once it’s there then having it available for other people to use and to find out new things is [sic] a good, good idea.” [mom, interview] “ .. If you [the CDCA] don’t know exactly who’s using [the data in the future] then I wouldn’t want certain things associated with my data, I know that makes the data maybe less useful. But, yeah for me it would be more like name and things like that...” [mom, interview] “…I think that putting [sic] a formal request process in place makes a lot of sense, and you’re going to weed out a lot of different groups that are you know trying to get data but not willing to do the work involved. … You’ll have people that are more serious about using it for the right reasons, so that’s definitely a strength. I think that meeting certain qualification criteria is also a strength.” [mom, interview] “I know [opt-out consent] is a passive yes… I know like (giggling) in my experience, I'm lazy. So, … it might be on my list to do but if other things happen, it may get bumped and I might forget about [it] or whatever and then later I’m like “oh no!” … Whereas when it’s the researcher contacting the person, in some ways I think that … it shows a little more respect because the researcher makes more of the effort…” [mom, interview] “I would think that there would need to be some kind of committee around accountability and following up to ensure that the data was used appropriately.” [mom, interview] “I like the contract idea and maybe a line of penalties if the data is misused, if they use it for personal gain or a third party company that’s not affiliated with this, with what they’re using it for or something.” [dad, interview] Children Secondary researchers “Well I think that whenever it’s children [sic], you want sort of higher safeguards right and, and more checks and more security, particularly around the personal identification type of stuff because it’s not [sic] them deciding, it’s their guardians.” [mom, interview] “I just don’t think that [sic] children’s data versus adult’s data should be something differently. … It should be protected whether its child or an adult.” [mom, interview] “If you contacted [children] when they became an adult or whatever, that would be another logistical [issue]. ... You just trust the consent of the parent when the child was a child….” [mom, interview] “I think that she [the child] should have the option that [at] 18, or whatever it is in the province, to have her data … taken out if she’s really that [sic] passionate about [it].” [mom, interview] “The industry section is all for profit so I mean that, that’s a little sketchy right because that has nothing to do with what we’ve already discussed about being smart and research and not more money and that kind of thing, it’s you know the other side of things. But, again if they have that information and they’re using it to make better products, better drugs, better food I mean that, that benefits everybody too. …I really just don’t see any significant down sides to data sharing except for you know the whole cha-ching.” [mom, focus group] “I don’t really like the pharmaceutical industry, just as a personal thing so I don’t really know that I’d want my information going there, cause that’s not why I did the study.” [mom, focus group] Participants highly unfamiliar with study topic Focus groups vs. interviews CDCA governance Post-access accountability Clarify privacy protections Future research Quantitative parent survey Adolescent perspectives Kiran Pohar Manhas Post Doctoral Fellow [email protected] Child Data Centre of Alberta www.research4children.com AOB & APrON [email protected] and [email protected] Research ethics – University of Calgary [email protected]
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