The right of medical confidentiality extends beyond death, meaning that ordinarily, health records remain confidential from third parties unless there is a clear duty of disclosure.

The Access to Health Records Act 1990 (AHRA) grants a statutory right of access to the medical records of the deceased to certain individuals in certain circumstances. The High Court has recently looked at the scope of that right for personal representatives. The Court has clarified the interpretation of an ambiguous statutory provision in the AHRA, which may otherwise have limited their right of access.

This case is relevant to anyone in a healthcare organisation working on records requests, in determining how much of a record can be shared in response to a request from a Personal Representative.

Who has a right of access under the AHRA?

Under s. 3(1)(f) of the Access to Health Records Act, the patient’s Personal Representative (i.e. their executor or the administrator of their estate) and any person who may have a claim arising out of the patient’s death may apply to the record holder for access to the records.

Under s. 5(4) of the AHRA, the scope of the right of access is limited by the following provision: "access shall not be given ... to any part of the record which, in the opinion of the holder of the record, would disclose information which is not relevant to any claim which may arise out of the patient’s death."

The issue the Court considered: who does the s. 5(4) limitation apply to?

Historically there have been two opposing views about the effect of the s. 5(4) limitation to see only 'relevant records' - does it apply to both personal representatives and people bringing a claim, or only to people bringing a claim?

The Department of Health's 2010 guidance is that the limitation to see only 'relevant' records applies only to those bringing a claim. In other words, Personal Representatives ordinarily have an unqualified right of access to the whole of the deceased’s records, and that they don't need a reason to ask to see it.

However, the BMA's guidance has been that information which is not directly relevant to a claim should not be disclosed to either the personal representative or any other person who may have a claim arising out of the patient’s death.

In the March 2020 case of re AB, the High Court was asked to determine between the two interpretations of s. 5(4), where a Personal Representative sought access to all of his deceased brother's records, which were held by a fertility clinic.

The High Court concluded that a Personal Representative's right of access was not limited to just those records necessary for the administration of the estate, siding with the position in the DHSC guidance. The right of overall access was only limited by s. 5(4) in the case of a person bringing a claim, who can only see records on a "need to know" basis, rather than being given open-ended disclosure of the entire content of the record.

What other limitations still apply?

Whilst the Court took the view that Personal Representatives ordinarily have a wide right of access because the s. 5(4) limitation does not apply to them, the Personal Representative's right under the AHRA is still limited in various circumstances by other provisions in the Act (which also apply to a person bringing a claim):

1. If the record includes a note, made at the patient’s request, that the patient did not wish access to be given on such an application (under s. 4);
2. Information which is likely to cause serious harm to the physical or mental health of any individual (under s. 5(1);
3. Information relating to or provided by an individual, other than the patient, who could be identified from that information (unless they consent or are a health professional) (under s. 5(1));
4. Information pre-dating 1990 (under s. 5(1));
5. Information provided by the patient in the expectation that it would not be disclosed to the applicant (under s. 5(3)); or
6. Information obtained as a result of any examination or investigation to which the patient consented in the expectation that the information would not be so disclosed (under s. 5(3)).

An NHS organisation holding the records is still required to take advice from an 'appropriate health professional' on the disclosure.

Whilst the clarity from the High Court over the extent of the Personal Representative’s right will be welcome in simplifying matters in the majority of cases, there will be some circumstances where the effect of this judgment raises ethical and conceptual questions for health organisations - for instance where there may be concerns about the motivations of the Personal Representative in seeing all the deceased's records, or the effect of them gaining access.

It would be prudent to take further advice in those circumstances and if necessary, it remains possible to ask the Court to consider the extent of disclosure under s.8 of the Act.

If you have any queries around rights of access to medical records or other information law questions, please speak to Andrew Latham, Tracey Lucas, or Adam Hartrick to find out more about how Capsticks can help.