Journal of Alzheimer's Disease
Published on Journal of Alzheimer's Disease (https://www.j-alz.com)

Home > When Patient Engagement and Research Ethics Collide: Lessons from a Dementia Forum.

TitleWhen Patient Engagement and Research Ethics Collide: Lessons from a Dementia Forum.
Publication TypeJournal Article
Year of Publication2017
AuthorsRobillard, JM, Feng, TL
JournalJ Alzheimers Dis
Volume59
Issue1
Pagination1-10
Date Published2017
ISSN1875-8908
Abstract

The importance of patient engagement in research has been gaining recognition since the turn of the 21st century. However, little is known about the perspectives of people with dementia on the process of discovery. To fill this gap and to inform priorities in patient engagement in the context of dementia research, the Clinic for Alzheimer Disease and Related Disorders at the University of British Columbia hosted an interactive session for members of the patient community and of the general public to share their views on various ethical aspects of the research process. Results from the session indicate that several current research ethics policies and norms in dementia research are not in line with participants' preferences. Here we discuss the importance of bridging the gap between researchers and patients and call for reforms in current standards of dementia research.

DOI10.3233/JAD-161285
Alternate JournalJ. Alzheimers Dis.
PubMed ID28550251
E-mail Icon
Comment Icon
  • Comment
Bookmark Icon Bookmark Recommend Icon Recommend Follow Icon Follow
  • Comment
| Bookmark | Recommend | Follow

Source URL: https://www.j-alz.com/content/when-patient-engagement-and-research-ethics-collide-lessons-dementia-forum