When a patient wants to amend their medical records

Dr Jayne Molodynski, medicolegal consultant at Medical Protection, provides advice and guidance on whether a patient can request amends to their medical records

Clinicians regularly contact Medical Protection for advice on handling approaches by patients over information contained in their medical records. The issues range from disputes about the accuracy of a clinical diagnosis, to entries made in the wrong patient’s notes. 

The evolution of data protection legislation in England has resulted in patients having high expectations of the degree of control they can exert over data held about them. This can lead to conflict if a clinician is unable to agree to their request to have information removed from their records.

In this article we will look at the relevant guidance and some common scenarios faced by Medical Protection members.

What does the GMC say?

The GMC’s guidance  Good Medical Practice states that you have a professional obligation to make entries in the records, and to both store and disclose them in line with your professional obligations and the provisions of the Data Protection Act 2018:

19. Documents you make (including clinical records) to formally record your work must be clear, accurate and legible. You should make records at the same time as the events you are recording or as soon as possible afterwards.

20. You must keep records that contain personal information about patients, colleagues or others securely, and in line with any data protection requirements.

21. Clinical records should include:

a. relevant clinical findings

b. the decisions made and actions agreed, and who is making the decisions and agreeing the actions

c. the information given to patients

d. any drugs prescribed or other investigation or treatment

e. who is making the record and when.

Understanding GDPR – what are the key principles?

The key principles are set out at Article 5 of the GDPR (pages 35-36) and can be summarised as follows:

1.           Data should be processed lawfully, fairly and in a transparent manner.

2.           Data should be collected for specified, explicit and legitimate purposes and be processed in a manner compatible with those purposes.

3.           Data should be accurate, relevant and limited to what is necessary for purpose.

4.           Data should be kept up to date and inaccurate data should be rectified without delay.

5.           Data should be stored (in a form that identifies the data subject) for no longer than is necessary for the purpose for which it is required (exemptions in relation to the public interest and research may apply).

6.           Data should be securely stored and protected against unlawful processing and accidental loss/destruction or damage.

Under the GDPR legislation, patients have a right to ask for factual inaccuracies in records to be rectified or deleted. This, however, does not give them the right to ask for an opinion you have made as a professional to be changed. The ICO has provided some useful guidance for small health sector bodies, which can be found here.

How do we deal with requests to have personal data rectified?

Individuals are entitled to have personal data rectified if it is inaccurate or incomplete.

If you have disclosed the personal data in question to third parties, you must inform them of the rectification where possible. You must also inform the individuals about the third parties to whom the data has been disclosed, where appropriate.

However, this doesn’t extend to where the data recorded accurately represents a medical opinion.

It is often impossible to conclude with certainty, perhaps until time has passed or tests have been done, whether a patient is suffering from a particular condition. An initial diagnosis (or informed opinion) may prove to be incorrect after more extensive examination or further tests. Individuals may want the initial diagnosis to be deleted on the grounds that it was, or has proved to be, inaccurate. However, if the patient’s records accurately reflect the doctor’s diagnosis at the time, the records are not inaccurate, because they accurately reflect a particular doctor’s opinion at a particular time. Moreover, the record of the doctor’s initial diagnosis may help those treating the patient later.

Further information on the ICO website relating to the right to rectification can be found here

How long do I have to comply with a request for rectification?

You must respond within one month. This can be extended by two months where the request for rectification is complex.

Where you are not taking action in response to a request for rectification, you must explain why to the individual, informing them of their right to complain to the supervisory authority and to a judicial remedy.

Scenario 1

You are a CAMHS consultant and you recently diagnosed a child with autism. The consultation was straightforward and therefore you were surprised to receive a request from the mother to issue an amended letter to the GP removing the diagnosis of autism. On further exploration with the mother you ascertain that she does not disagree with the diagnosis but is concerned about her child being ‘labelled’.   

Advice

As highlighted above, doctors have a professional and legal obligation to maintain accurate records. Given the matter relates to a child, you also have a professional obligation to act in their best interests. While patients, or in this case the parent of a child, are given the right to access their record and to request that factual inaccuracies are corrected, they cannot determine what is included in the record nor seek to change any detail that is accurate, or which records a clinical opinion.

In a case such as this it would also be prudent to consider the age of the child. The Information Commissioner considers that children around the age of 12 may have the requisite capacity to make decisions about their own medical records. You may therefore need to assess the capacity of the child to be involved in these discussions.

You can reassure them about the duty of confidentiality and explain the information would not be disclosed to a third party without appropriate consent except in very special circumstances; for example if there was a statutory obligation to do so, in response to a court order or if it was necessary in the public interest. The GMC’s guidance 0 to 18 years: guidance for all doctors can be found here and the relevant paragraph is below:

Sharing information without consent

46.If a child or young person does not agree to disclosure there are still circumstances in which you should disclose information:

a. when there is an overriding public interest in the disclosure

b. when you judge that the disclosure is in the best interests of a child or young person who does not have the maturity or understanding to make a decision about disclosure

c. when disclosure is required by law

Other considerations

Dependant on the age of the child, it would be advisable to explore with the mother, or both of them, their particular concerns about the diagnosis. You could:

• Signpost to support groups or specialist support they may wish to contact.
• Discuss the risks associated with other health professionals not knowing about the diagnosis and the potential impact on the child’s health.

Overall it is your duty as a doctor to accurately record your clinical findings. However, there should be a conversation with the mother and/or the child to discuss their worries and provide reassurance that the records are confidential unless she consents otherwise, with a few limited exceptions.

Scenario 2

You are a GP and you receive a request from a hospital consultant asking for their letter to be replaced by a new version, which they have provided. This is a consequence of the patient challenging the factual accuracy of a comment about their family history. The letter was scanned on to System One yesterday.

Advice

This situation can be distinguished from the first scenario because it has been accepted that the information contained in the records is inaccurate. The consultant states in the second letter that she recorded the history incorrectly; therefore, this is a case where it would be reasonable for the original letter to be removed and replaced with the amended version.

This is less likely to be the appropriate course of action where the inaccurate information has been in the records for a longer period of time. This is because it is possible decisions could have been made on the basis of the incorrect information, which may not be easily understood were the record to be changed. The remedy in this situation would be to add an addendum to the records reflecting the inaccuracy. A form of words could be agreed with the patient.

Any amendments to medical records will always be evident in the audit trail. It is advisable to clearly record why any information has been removed or amended and to provide the date on which this occurred.

For medicolegal advice relating to this or any other topic, please call our advice line on 0800 561 9090 or email [email protected]