Patient Narratives Representing Patient Voices to Inform Research: A Pilot Qualitative Study

Joan Ash, Erika Cottrell, Lauren Saxton, Lucas Newman, Eric Gebhardt, Mark Helfand

Research output: Chapter in Book/Report/Conference proceedingConference contribution

6 Scopus citations

Abstract

We are investigating the feasibility and effectiveness of establishing a library of patient narratives to inform patient-centered research in the U.S. Veterans Affairs organization. Using qualitative methods, we conducted a needs assessment of 15 researchers and then interviewed and videotaped 11 veterans with traumatic brain injury or diabetes. We developed a method for displaying the narratives to researchers modeled after a UK initiative called DIPEx and then performed preliminary usability testing. We found that it is not only feasible to provide researchers with patient narratives that could help guide their research, but that similar narratives might be useful to practitioners, health system decision makers, and other patients as well.

Original languageEnglish (US)
Title of host publicationStudies in Health Technology and Informatics
PublisherIOS Press
Pages55-60
Number of pages6
Volume208
ISBN (Print)9781614994879
DOIs
StatePublished - 2015
EventInternational Conference on Information Technology and Communication in Health, ITCH 2015 - Victoria, Canada
Duration: Feb 26 2015Mar 1 2015

Publication series

NameStudies in Health Technology and Informatics
Volume208
ISSN (Print)09269630
ISSN (Electronic)18798365

Other

OtherInternational Conference on Information Technology and Communication in Health, ITCH 2015
CountryCanada
CityVictoria
Period2/26/153/1/15

Keywords

  • Consumer health
  • patient narratives
  • research design
  • usability

ASJC Scopus subject areas

  • Biomedical Engineering
  • Health Informatics
  • Health Information Management

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  • Cite this

    Ash, J., Cottrell, E., Saxton, L., Newman, L., Gebhardt, E., & Helfand, M. (2015). Patient Narratives Representing Patient Voices to Inform Research: A Pilot Qualitative Study. In Studies in Health Technology and Informatics (Vol. 208, pp. 55-60). (Studies in Health Technology and Informatics; Vol. 208). IOS Press. https://doi.org/10.3233/978-1-61499-488-6-55