What you can ask about your parent's care records

Before the carer leaves, they spend a minute at the end of the sofa writing up the visit. Your parent has never thought much about it. Then one afternoon, with you sitting there, they wonder out loud who reads all that. This is information, not medical or legal advice. It sets out what home care guidance and privacy regulators in a few places say about care records and a person's own information, it states no rule for where your parent lives, and it will not tell you what anything written in a record means.

What a care record is for

In England, NICE's home care guideline recommends that the diary care workers fill in at each visit holds enough detail to keep the person, their unpaid carers and the practitioners involved fully informed about the care provided. The same NICE guideline for England recommends that everyone involved in providing a person's care and support has access to their care plan and care diary.

Asking what is held

In the UK, the Information Commissioner's Office, the data protection regulator, says a person can ask an organisation whether it is using or storing personal information about them, and can ask it for copies. In Ireland, the Data Protection Commission says a person can ask an organisation for a copy of the personal information it holds about them, and can ask to be told what it is used for, who it has gone to or will go to, and how long it will be kept. Ireland's Data Protection Commission also encourages putting a request for your own information in writing where that is practical.

Canada's Office of the Privacy Commissioner says people have a general right to see the personal information held about them by businesses covered by Canada's federal private-sector privacy law, and may ask for factual errors or omissions to be corrected, though which privacy rules apply differs by province.

When the information is your parent's

The UK's Information Commissioner's Office says someone can ask for another person's information on their behalf if they can show that person has given permission, and that the organisation does not have to hand it over if it is not satisfied the permission is there. Canada's Office of the Privacy Commissioner says people can ordinarily ask only for information about themselves, and may be entitled to a family member's information if that family member consents in writing.

Either way, the question of who asks starts with your parent, and so does the permission.

Asking for a correction

The UK's Information Commissioner's Office says people can challenge whether personal information an organisation holds about them is accurate, and ask for it to be corrected, or completed where something is missing. Canada's Office of the Privacy Commissioner says that where a person and an organisation cannot agree on changing their information, the person can have their concerns recorded.

These are questions for the provider, and your parent may want you there when they ask, or may prefer to ask alone. Questions they might bring include:

• who fills in the record at each visit;
• how they can see what is held about them, and ask for a copy;
• what the information is used for, who it is passed to and how long it is kept;
• how to ask for something to be corrected or filled in, and what happens if the provider sees it differently;
• what the provider would need from your parent before a family member could ask on their behalf.

The guidance and regulators here speak for England, the wider UK, Ireland and Canada, and how a request works can differ by where your parent lives. Anything in a record that raises a question about your parent's health is worth bringing to their doctor or care team, and when to bring it up there is your parent's call. Keeping a parent's privacy when you help at home looks at privacy in the home more widely, and Getting organized: documents, contacts, and access covers the practical side of gathering information with your parent.