Medical records - to access or not?

It has generally been recognised within the medical and legal sectors that personal representatives of a deceased person were entitled to disclosure of the deceased’s medical records in any circumstances with other individuals only having the right to such disclosure if they had a claim which may arise out of the patient’s death. In the recent case of re AB a fertility clinic sought to challenge the position and refused to provide access to a patient’s records by his personal representative, thereby resulting in a formal application to court.

The facts of the case

AB, the applicant, was the brother and personal representative of CD who had died two years ago. AB understood that about five years before his death CD had made arrangements with a fertility clinic, the respondent in the proceedings, to freeze and store his sperm.  Following CD’s death, AB, in his capacity as personal representative, made a request that the clinic provide him with copies of all records relating to the arrangements for the storage and use of his brother’s sperm, including any embryos created by using his sperm. Conscious of the need to maintain confidentiality the clinic refused the request and AB therefore made an application to court seeking disclosure of the records.

The law

Under Section 3(1) of the Access to Health Records Act 1990 (“the AHR”), an application may be made for a deceased’s medical records by their personal representative and any person who may have a claim arising out of the patient’s death. In the case of a personal representative, however, Section 3(1)(f) provides that a personal representative’s right to access health records is free standing and not confined to disclosure of information which is relevant to any claim which may arise out of a patient’s death.

Section 3(2) provides that where an application has been made the record holder shall give access to the records to which the application relates “within the requisite period”, i.e. the period of 40 days starting with the date upon which the request for access is made.  Failure to comply with a valid request within the requisite period triggers a right for the applicant to make an application to court for disclosure.

Section 4(3) of the AHR also provides that access should not been given if the record includes a note, made at the patient’s request that he did not wish access to be given – no such note appeared in CD’s records.

Section 5(1) also provides that access shall not be given to any part of a record where, in the opinion of the holder, the record would disclose “information relating to or provided by an individual other than the patient who could be identified from that information”.

The general right of access to any records is further curtailed by Section 5(4) which states that access shall not be given to any part of a record which, in the opinion of the holder, would disclose information not relevant to any claim which may arise out of the patient’s death.

In this particular case, consideration also had to be given to the provisions of Section 33 of the Human Fertilisation and Embryology Act 1990 (“the HFE”). Under Section 33A(1)(e) a person to whom a licence applies (the respondent) is prohibited from disclosing any information of the type listed in Section 31(2) including “the keeping of the gametes of any identifiable individual or of an embryo taken from any identifiable woman and the use of the gametes of any identifiable individual other than their use for the purpose of basic partner treatment services”.

This provision is, however, relaxed by Section 33(2) which relaxes the general prohibition on disclosure if the disclosure is made under Section 3 of the AHR.

Finally, Section 33A(5) states that “subsection (1) does not apply to the disclosure to any individual of information which:

(a)    Falls within subsection (2) of Section 31 of this Act by virtue of any of paragraphs (a) to € of that subsection, and

(b)    Relates only to that individual …”

The applicant’s case

AB’s case was based firstly upon a statutory right under the AHR and secondly, in reliance on the court’s inherent jurisdiction to make declarations and other orders with regard to the body or other physical remains of a deceased person.

His primary case was that the application was brought under Section 3 of the AHR and was therefore permitted as of a right given his status as personal representative.

In support of his application he relied on guidance issued by the Department of Health (“DOH”) which stated that personal representatives were the only people who had an unqualified right of access to a deceased’s medical records and need give no reason for applying for access. His counsel acknowledged that there was contrary guidance issued by the British Medical Association (“BMA”) but he asserted the guidance issued by the DOH should carry greater weight given that it was issued by a Government department.

As to his alternative claim, AB argued that he was entitled to seek an order under the court’s inherent jurisdiction seeking disclosure on the basis that it was sought for the purposes of ensuring his brother’s sperm was stored, used and disposed of in accordance with such consent as he may have given, he, as personal representative now being the only person who could ensure the clinic acted in accordance with his brother’s consent.

The respondent’s case

The clinic largely adopted a neutral position as regards the application. However, they did dispute AB’s interpretation of Section 3(1)(f) of the AHR, the clinic contending that personal representatives, like any other individuals, may only have access to a deceased’s records if they may have a claim arising out of the patient’s death.

In this regard, the clinic argued that in order for the court to be satisfied that Section 5 of the AHR does not apply to personal representatives it would first need to be satisfied that there is ambiguity in the words used in Sections 3(1)(f) and Section 5.

If so satisfied, the court would then need to be persuaded that it would be appropriate to apply the mischief rule to look at the rationale of the legislation to interpret the ambiguity.

The clinic contended there was no ambiguity in Section 3(1)(f) and Section 5(4) and that the natural and ordinary meaning of Section 5(4) is that a record holder cannot allow access either by a personal representative or a person who may have a claim arising out of the patient’s death to any records which, in their opinion, would disclose information not relevant to any such claim.

In support of that contention, the clinic submitted that as there is no distinction made in Section 5(4) between personal representatives and “any persons” the natural and ordinary meaning of the section is that it applies generally to all persons referred to in Section 3(1)(f).

The clinic relied upon the guidance from the BMA which stated “… a patient’s personal representative and any person who may have a claim arising out of the patient’s death has a right of access to … the deceased’s personal records directly relevant to a claim.  It is the BMA’s opinion that under Section 5(4) … no information which is not directly relevant to a claim should be disclosed to either the personal representatives or any other person who may have a claim arising out of the patient’s death”.

The BMA’s guidance was contrary to the guidance published by the DOH which, the clinic argued, was either an inaccurate or incomplete statement of law.

Lastly, the clinic submitted that there is no legal provision allowing a personal representative to step into the individual patient’s position to request disclosure of records under Section 33(5) of the HFEA.

The Department of Health & Social Care

The Department of Health & Social Care (“the DHSC”) responded to a request to make written submissions, the DHSC having oversight of the statutory scheme. In summary, the DHSC agreed with the applicant’s primary submission that Section 3(1)(f) encompasses two distinct categories of applicant. These categories, the DHSC submitted, are disjunctive with the result that a personal representative does not need to establish that he has or may have a claim arising out of the patient’s death of the person whose records are sought.

It further concurred with AB’s submission that Section 5(4) of the AHR is a qualification that applies only to the second category of applicant identified in Section 3(1)(f), namely “any person who may have a claim arising out of the patient’s death”.

Lastly, it stood by the guidance published by the DOH.

Court’s findings

The court found that the wording of Section 3(1)(f) was plain on its face – the two categories are disjunctive and the reference to “a claim arising out of the patient’s death” is expressly tied to the second category and not to a personal representative.

The court also found that if all those claiming under this subsection were required to establish that they had a claim arising out of the patient’s death there would be no need to identify the personal representative specifically for inclusion in the provision.

As to the respondent’s case regarding ambiguity in the words of Section 3(1)(f) and Section 5(4) therefore being unsustainable and only capable of succeeding if interpreted as being the primary provision to which Section 3(1)(f) is subservient, the contrary, said the court, is plainly the case. Section 5(4) is in the form of a proviso which provides a reasonable and proportionate limitation on the degree of access to a deceased’s medical records which is to be afforded to an individual who seeks to make a claim arising out of the patient’s death. Such an individual can only see records on a “need to know” basis.  The court considered there was no ambiguity and it was not necessary for a more convoluted process to be undertaken in the manner suggested by the respondent.

As to Section 33A(1) of the HFE the court concluded that the prohibition on disclosure in this section was disapplied with respect to any request for disclosure made under Section 3 of the AHR.

Lastly, the court mentioned that whilst there was no need to look for external support, the court concluding that the statutory language was clear, the court noted that the DHSC has consistently maintained the same position as that argued on behalf of the applicant.

Judgment

AB made an application for access to his brother’s records in his capacity as his personal representative under Section 3 of the AHR. A personal representative is expressly identified in the AHR as a category of applicant.  A valid request had been made by him under the AHR and the clinic was obliged to provide the records as sought.  Accordingly, the court made the declarations as regards disclosure of the records as sought by the applicant.