Dementia Support Line
Confidentiality and anonymity
How to protect people's identity and privacy when you are researching the experiences of people with dementia.
- How to recruit people affected by dementia
- Tips for recruiting people affected by dementia to measure their experiences
- Remuneration and reward for people affected by dementia
- Consent and capacity of people with dementia
- Carers, Proxies and the Triangle of Care
- You are here: Confidentiality and anonymity
- Managing risk, safeguarding and concern
- Recruiting people with dementia for user research - useful organisations
- Cultural sensitivity and awareness
Confidentiality
Consider whether you need to identify service users/participants.
Some methods of getting feedback and involving people such as photo and video diaries, will identify individuals. Others may generate powerful personal stories, or may observe interactions on particular wards, and you will need to consider the extent to which your findings identify the person sharing their experience.
- Reassure people, where appropriate
- that you will protect their anonymity
- only people who need to know will have access to their personal data for the administration of your activity such as to send invites, plan travel and meals.
- only people who need to know will have access to their feedback in ways that identify them.
- about the circumstances in which you would be obliged to share information with others.
- that you will protect their anonymity
- Encourage people to be open and honest - for example let them know that they will not suffer any bad consequences if they give negative feedback.
