Project Update - October 2019
In light of feedback received in August 2019 from the Data Protection Commission (DPC) following our request for their review of our Data Protection Impact Assessment (DPIA), this project is now on hold. In the interests of transparency you can read the detailed feedback from the DPC below.
We are reflecting on the interpretation by the DPC as set out below. We have a concern in relation to proportionality and risk in respect of potential data breaches. We also have a concern that an overly restrictive interpretation of the definition of data subjects may have a negative impact on the delivery of innovative online family carer support initiatives. Furthermore, we are concerned about the apparent narrow interpretation of what constitutes a research ethics committee and how this may impact negatively on cross Atlantic research collaborations.
We plan to engage with our member organisations and others before deciding on a future course of action.
Project Documents - Updated October 3rd 2019
- DPC Observations - August 23rd 2019
- DPC Comments on draft DPIA submitted - Feedback received August 23rd 2019
- Data Protection Impact Assessment - Submitted to the Data Protection Commission on July 16th 2019 for their observations.
- Informed Consent
- GDPR Notice (Version 3. July 15th 2019)
(Original) Project Outline
Thanks to funding under the Dormant Accounts – Carers Measure, a new international collaborative project has begun that will seek to improve the well-being of a cohort of dementia family carers through online ‘friendsourcing’. In collaboration with Indiana University and the Alzheimer Society of Ireland, we look forward to leading this exciting new project.
Speaking about the project, Dr. David Wilkerson, Indiana University School of Social Work said:
“Social media increasingly transforms the ways in which dementia caregivers obtain information and support. Friendsourcing Peer Support is an eHealth intervention. It uses a web app to join dementia caregivers’ social networks in a support group. Research found this intervention to be feasible and acceptable to dementia caregivers who are familiar with social media. In addition, caregivers experienced several improvements that enhanced their caregiving. We are excited about the opportunity to replicate this intervention with a group of dementia family carers in Ireland.”
Recruitment for the first phase of this project is expected to begin in August 2019. For further information email firstname.lastname@example.org
Read June 11th 2019 Press Release here
Those interested in keeping up to date with this project can subscribe to the project newsletter here