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  • Data protection and confidentiality
    • Data Protection disclaimer
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    • Your information after death
    • Controlled access to your information: Your rights
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In addition to this section, please see the sections on Advanced Directives and Permanent Preservation of Records

Most of us would never think to issue instructions about what to do with our personal information after we die, however leaving clear instructions can aid your legacy and the people who are left behind.

Unfortunately the Data Protection Act 1998 does not apply to the deceased. The only Act that supports the confidentiality of a deceased individual is the Access to Health Records Act 1990, together with the NHS Records Management code of practice, which controls how access can be gained to the records of the deceased. In essence the Access to Health Records Act 1990 grants access to:

·       The personal representative of the deceased

·       Anyone with a valid claim requiring access to the deceased care records

In essence the Foundation Trust endeavours to treat the records of the deceased in the same way as those of the living, which means the records will only be released when a legitimate reason for access has been established and accepted.

In general your information is stored for 8 years after your death, or 30 years if you died while in our care. At the end of the appropriate timeline the Foundation Trust makes a decision as to whether your records are necessary to keep for medical, legal or historical interests and either sends them off for permanent preservation or destroys them.

Your information may be used for some purposes after your death. These commonly include research and coroner inquests. You may have the right to refuse your records being used in research after your death. You should make this explicit instruction to your care team or the Data Protection Officer in order for the Foundation Trust to consider withholding information. In the event of a Coroner Inquest the Foundation Trust will be legally obliged to release whatever information the coroner wants and will have no control over what the coroner may release to the public. Again if you wish to have your information kept confidential after you die then it is best to provide explicit instructions to enable the Foundation Trust to respect your wishes.

Access by Relatives of the Deceased

In general the Foundation Trust will attempt to keep your records confidential and deny access to your relatives after your death. The only exception is that if you die in our care it is traditional to release some information at the time of your death to your close family members. What is released is dictated by the situation and the perception of the care workers meeting with your family. Otherwise if your relatives cannot demonstrate a reasonable requirement to receive your records under the Access to Health Records Act 1990 then the records remain confidential.

The Foundation Trust withholds information from your relatives on the belief that if you wished to share your information you would have done so during your life.

You may want to consider providing the Foundation Trust with instructions about who has access to your information, either by denying access or granting full access. The Foundation Trust will use your instructions when considering release of the information in the event of your death.