Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition.

Autor: Raspa M; RTI International, Research Triangle Park, NC, USA. Electronic address: mraspa@rti.org., Paquin RS; RTI International, Research Triangle Park, NC, USA., Brown DS; Brown School, Washington University, St. Louis, MO, USA., Andrews S; RTI International, Research Triangle Park, NC, USA., Edwards A; RTI International, Research Triangle Park, NC, USA., Moultrie R; RTI International, Research Triangle Park, NC, USA., Wagner L; RTI International, Research Triangle Park, NC, USA., Frisch M; University of North Carolina at Chapel Hill, Chapel Hill, NC, USA., Turner-Brown L; University of North Carolina at Chapel Hill, Chapel Hill, NC, USA., Wheeler AC; RTI International, Research Triangle Park, NC, USA.
Jazyk: angličtina
Zdroj: Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research [Value Health] 2020 Dec; Vol. 23 (12), pp. 1639-1652. Date of Electronic Publication: 2020 Oct 26.
DOI: 10.1016/j.jval.2020.06.016
Abstrakt: Objectives: The purpose of this study was to examine parental preferences for researchers accessing their child's electronic health record across 3 groups: those with a child with (1) a known genetic condition (fragile X syndrome FXS), (2) a suspected genetic condition (autism spectrum disorder [ASD]), and (3) no known genetic condition (typically developing).
Methods: After extensive formative work, a discrete choice experiment was designed consisting of 5 attributes, each with 2 or 3 levels, including (1) type of researcher, (2) the use of personally identifiable information, (3) the use of sensitive information, (4) personal importance of research, and (5) return of results. Stratified mixed logit and latent class conditional logit models were examined.
Results: Parents of children with FXS or ASD had relatively higher preferences for research conducted by nonprofits than parents of typically developing children. Parents of children with ASD also preferred research using non-identifiable and nonsensitive information. Parents of children with FXS or ASD also had preferences for research that was personally important and returned either summary or individual results. Although a few child and family characteristics were related to preferences, they did not overall define the subgroups of parents.
Conclusions: Although electronic health record preference research has been conducted with the general public, this is the first study to examine the opinions of parents who have a child with a known or suspected genetic condition. These parents were open to studies using their child's electronic health record because they may have more to gain from this type of research.
(Copyright © 2020 ISPOR–The Professional Society for Health Economics and Outcomes Research. Published by Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
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