Q&A – Transgender Query
Question:
Hello, I’ve been advised by Practitioner Services to contact yourselves for some advice. We have a transgender patient who is asking for all details of her medical record which relate to her previous gender to be deleted. MDDUS have advised me that the patient is entitled to this but Practitioner Services are advising that we are not meant to redact any patient medical information even in this sensitive case. I wonder if you have any advice/guidelines on cases like these that you are able to give me? Many thanks.
Answer:
Many thanks for your question which is clearly a complex important area. We have informed the Information Governance team at NHS National Services Scotland of this question and they will be considering the implications of this response more fully. Please bear in mind this is written by primary care professionals with an interest in health informatics rather than lawyers so it is written entirely without prejudice as a guide and can’t be relied upon in anyway as ‘law’.
From a clinical information perspective the people looking after the patient in the future need to know the history and the genetic gender to treat the individual safely, from both the patient’s and the doctor’s perspective. In addition though the person may be entitled to have the right to ask to be forgotten, we need to look at the necessity of the information as at the time it was recorded it would be contextually right and refer to the correct gender at that point in time.
Gender assignment is a “protected characteristic” under the Equalities Act of 2010 so there is a legal duty not to discriminate etc. However unlike for other protected characteristics such as sex, religion, race etc. in this case the Gender Recognition Act 2004 also applies. This makes it a criminal offence to disclose a person’s gender history after they have changed gender except when:
- It is to another health professional AND
- It is for a medical purpose AND
- There is a reasonable belief that the patient has consented to the disclosure
In this case where “a transgender patient who is asking for all details of her medical record which relate to her previous gender to be deleted” it would seem clear that the 3rd criterion above is not met. Therefore they have a legally protected right to request these history elements to be deleted.
It would be important to ensure the practice has instructions in writing from the patient to underpin the steps taken, it would be also prudent to arrange a face to face meeting with the patient to establish how they feel about the risks and benefits of redacting data and their views on the extent of redaction required.
We would suggest locking down access to ‘logically deleted’ data (which is not completely deleted). The data was not incorrect when made and others may have acted upon it. ‘Logical Deletion’ meets medicolegal and traceability requirements meaning that information cannot be literally removed, since it must always be possible to revert back to a previous state of the record in which the deleted information is intact. Accordingly, information can only ever be ‘logically deleted’, it is of note that modern electronic health record systems do not provide the functionality to permanently redact previous entries.
This ‘logical deletion’ process would be time consuming and performed manually. In addition thought must be given to pronouns used previously that were correct at the time of writing.
Pragmatically the way forward would be to ‘logically delete’ most of the patient’s electronic health record and ensure previous relevant diagnoses are coded as high level without reference to gender. Unfortunately this process will be time consuming and will need to be performed manually by a clinician with suitable expertise.
Trust you find this helpful, written entirely without prejudice,
SCIMP