"Is transferral of all medical data through referral process ethical?"

About: Devon Access and Referral Team (DART)

(as the patient),

This is a story regarding my very recent referral made by my GP Practice near Exeter through the Devon Access and Referral Team, DART.

After receiving my referral I was shocked to find an entire summary of my personal medical history, including my health promotion data on the back page of the referral letter. After speaking to my GP practice manager they confirmed that this comprehensive transfer of medical data was completely normal protocol and that the GP surgery is obliged to state the medical history in case it is relevant to the referral and indeed if they refused to transfer the medical history, they risk not getting the referral accepted.

My point is that I have not agreed either explicitly or tacitly for this information sharing (to my knowledge) and nor have I been given the option to ‘opt out’ of such information being transferred.

I feel that others would be horrified if they knew that this was taking place. In addition, if there is a need for the health promotion data to be shared in a non-anonymous way such as this, I think patients should be told each time they are asked to give such information. I think it should be up to the patient to also specify what ‘sensitive’ information they would wish kept out of a referral process that involved an automated transfer of data, as indeed this appears to be an example of.

Relevant data should be shared but only with the explicit consent of the patient prior to any referral being made, whether this is through a ‘referral refinement’ service or directly to the clinician providing a second or tertiary level service.

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Responses

Response from Gemma Smith, Project Support Manager - Devon Referral Support Services, Devon Access & Referral Team (DART)

Dear ’Yardstone946’,

Thank you for getting in contact with us to tell us about your experience. We are unable to give you a detailed response at this time and have contacted our colleagues in NHS Devon to get some further information in order to answer your questions as best we can. We will respond to your post in the next 48 hours.

Best Wishes

Gemma Tremlett

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Response from Gemma Smith, Project Support Manager - Devon Referral Support Services, Devon Access & Referral Team (DART)

Dear Yardstone946,

Please accept my apologies for the delay in responding to your comments; I am sorry your experience of being referred has not been a positive one.

When your GP decides to refer you for a consultant opinion a certain amount of information is required to inform the consultant about why you are being referred and any relevant past medical history relating to the referral being made at that time. This information is securely sent to the consultant who needs to know your clinical circumstance, including any blood test results, diagnostic tests or other investigations you may have had previously as appropriate. It is shared because it is medically necessary to do so for the consultant to advise on the best next steps for you.

It is your GPs responsibility to make sure unrelated medical history is not sent.

Patient information is allowed to be shared with anyone involved in the clinical care of the patient. A patient has the right to refuse to share information about themselves with specific individuals, groups or teams but the patient must be made aware that this can have an impact on the delivery of care to the patient. In the absence of any expressed wishes from the patient, information will be shared in support of the clinical need to do so.

I hope this has gone in some way to answer your concerns, if you have any further questions around this please feel free to ring me contact me directly on 01626 883766 on Monday to Friday from 9am until 5pm.

Best Wishes

Gemma Tremlett

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