Medical records model needs treatment
Under the Freedom of Information Acts and regulations a spouse, partner or next of kin will only be granted access when the public interest would be better served by granting rather than refusing the request. Ministerial guidance notes, which are incorporated into the regulations, set out factors which a decision maker should take into consideration in reaching such a decision.
The seeming desire behind the scheme is to provide a mechanism for family members, including a spouse and next of kin, to access personal information of a decedent, while providing for refusal in certain circumstances, for example where a decedent would not have consented to the release while alive.
However, without some form of advance directive or prior consent to release, a decision maker must ultimately second-guess the intentions of the decedent with respect to their medical records.
One further right is conferred by the Freedom of Information Acts and regulations. This is the right to apply for the amendment of personal information held by public bodies, including the HSE, on the grounds that it is incomplete, incorrect or misleading. The Information Commissioner has in the past (Case no. 98158) held that information is incomplete where it lacks requisite details which might put a different complexion on the information.
A request for amendment of an incomplete record will only be granted to a spouse or next of kin when, having regard to all the circumstances, the public interest would on balance be better served by granting than by refusing to grant the request.
As with access requests, a request for amendment must be made to the HSE in the first instance; if refused this can be appealed to the Information Commissioner whose decisions are reviewable by the High Court.
Assisting decision makers
While far from perfect the current system does provide surviving family members with a scheme to access or amend the medical records of deceased relatives. Unfortunately within the overall information governance model for medical records generally the intentions or wishes of a patient regarding the release or reuse of their records following death are not formally recorded. Recording such information as part of a patient’s medical records would greatly assist decision makers when faced with difficult access requests.
This does not mean a patient should have a veto over the reuse or disclosure of their medical records following death. As is clear, the public interest will in certain circumstances require the release of records in order to ascertain the cause of death or to ensure health services can be audited and assessed as part of ongoing efforts to ensure accountability and maintain public trust in their services.
Ultimately, recording the intentions or wishes of a patient regarding the reuse of their records following death, would be advisable, as it would ensure that a decedent’s interests are recognised when adjudicating on access requests even where no surviving family exists to intervene.
Damien McCallig is a PhD candidate at the School of Law at NUI Galway and an Irish Research Council scholar