When Patient Engagement and Research Ethics Collide: Lessons from a Dementia Forum.
نویسندگان
چکیده
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.
منابع مشابه
Effects of intergenerational Montessori-based activities programming on engagement of nursing home residents with dementia
Fourteen nursing home residents on a dementia special care unit at a skilled nursing facility took part in one-to-one intergenerational programming (IGP) with 15 preschool children from the facility's on-site child care center. Montessori-based activities served as the interface for interactions between dyads. The amount of time residents demonstrated positive and negative forms of engagement d...
متن کاملDevelopment of EFL Teachers’ Engagement and Professional Identity: The Effect of Discussing Teacher Competences via E- Collaborative Discussion Forum
This study is a mixed method research that investigated the effect of electronic collaborative discussion forum on Iranian EFL teachers' engagement and professional identity and their development in terms of teachers‘ competences as they were engaged in collaborative teacher inquiry. For this purpose, 5 EFL teachers participated in 11 online forum discussion sessions. Before participating in di...
متن کاملThe Why, Who, What, How, and When of Patient Engagement in Healthcare Organizations: A Response to Recent Commentaries
متن کامل
Using the Taxonomy and the Metrics: What to Study When and Why; Comment on “Metrics and Evaluation Tools for Patient Engagement in Healthcare Organization- and System-Level Decision-Making: A Systematic Review”
Dukhanin and colleagues’ taxonomy of metrics for patient engagement at the organizational and system levels has great potential for supporting more careful and useful evaluations of this ever-growing phenomenon. This commentary highlights the central importance to the taxonomy of metrics assessing the extent of meaningful participation in decision-making by patients, consumers and community mem...
متن کاملLessons Learned from Developing a Patient Engagement Panel: An OCHIN Report.
There is renewed interest in patient engagement in clinical and research settings, creating a need for documenting and publishing lessons learned from efforts to meaningfully engage patients. This article describes early lessons learned from the development of OCHIN's Patient Engagement Panel (PEP). OCHIN supports a national network of more than 300 community health centers (CHCs) and other pri...
متن کاملذخیره در منابع من
با ذخیره ی این منبع در منابع من، دسترسی به آن را برای استفاده های بعدی آسان تر کنید
عنوان ژورنال:
- Journal of Alzheimer's disease : JAD
دوره 59 1 شماره
صفحات -
تاریخ انتشار 2017