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"Use of identifiable information without consent"

About: NHS Grampian

(as a service user),

The NHS Grampian Website, Confidentiality, Health Records and Data Protection page states:

“If you are concerned about your information being shared for the purposes of medical training and research, you can object by writing to…..”

“If you do so, your record will be marked and it will not be made available for audit, research or other studies without your express consent”.

“Sometimes the law allows the NHS to share your information without your permission, for example to notify of an infectious disease”.

The current version states "last updated 23rd July 2019”.  However, to the best of my knowledge, this information has not changed for many years. 

The information is definitely the same as stated in November 2018 when I told  NHS Grampian Information Governance that I found this information misleading and inaccurate based on my experiences and suggested they review it. In my opinion, a simple addition could have been made. For example,

“Sometimes the law allows the NHS to share your information without your permission and irrespective of any Marker placed on your record.  For Example to notify of an infectious disease or if you have cancer"

Many years ago, I requested a Marker be placed on my records.   In 2014 and 2016, I tried to check with NHS Grampian Information Governance that this was actually in place.  This was never confirmed.  Response through the ARI Feedback Service in 2016 was to contact NHS Grampian Information Governance  i.e. the very department that was not communicating in the first place.  At that point I gave up.

 However, in 2018, I attempted confirmation again and after several communications, it was confirmed in July 2018, that a Marker had "now" been placed on my records, (which would imply that it had never been placed when originally requested).  I also requested confirmation that my records had not been used for purposes that the Marker was supposed to protect against.  I was informed that they were not aware of any use.

In October 2018 I received a questionnaire from a Company called Quality Health.  This was in relation to recent experiences of Cancer and Treatment.  I understand that Quality Health is a third party company contracted by the NHS.

This company had been given my details.  I had to jump through a number of hoops to have my data removed..  When I spoke with a Manager at Quality Health, I was told I needed to make a formal request to withdraw “my consent” for them to hold my details which I had never given consent for them to hold in the first place.

 On further query with Quality Heath about where they had received my information from, I was eventually informed that it was via the Information Services Division (ISD).  On contacting NHS NSS ISD,  little assistance was given.  I was advised to contact NHS Grampian as this is where my information would have come from.

I then discovered the existence of the Cancer Registry which NHS NSS ISD have responsibility for.  I also discovered that I also had no choice in my personal information and data being used in the Cancer Registry or being shared with others, like Quality Health above.

 After a number of communications, NHS Grampian Information Governance stated that even though there is an alert on my record, this can not be adhered to because of the functionality of the data systems which do not detect the alert.  That to work around this would be too resource intensive. I was advised to contact NHS NSS ISD again.

I was given a contact number for Glasgow. This number went through to someone  who did not deal with the Cancer Registry. 

These are my feelings on the matter. 

I get cancer and along with all the losses and changes due to it, this disease also meant my Record Marker was rendered meaningless. It meant that I lost my right to be informed that my identifiable details will be used for research and shared with whoever NHS NSS ISD judges suitable.  That having cancer meant that there was no need to inform me of the Cancer Registry beforehand.  That it was thought more appropriate that I find out about this, and the right to object, by accident and only after the event. My treatment was at the ARI. There were many opportunities to inform me.  I find the situation disrespectful, lacking transparency and paternalistic.  I suggest the ARI, NHS Grampian and NHS NSS ISD make improvements where necessary.

If ARI current practice is still not to inform people, then I suggest that you change this.  At the very least, you could give people an information leaflet which also advises how people can object.

If NHS Grampian Information Governance still cannot prevent information being shared for people who choose to have a Marker on their records, then I suggest you review and adapt information, for example on the web page above, to reflect this.

I would suggest that NHS NSS ISD ensure publication and adequate distribution of publicity information to medical services.  I also suggest that they make the “opt out” procedure less cumbersome.  I note that NHS England have clear leaflets and a relatively straightforward opt out procedure.  I located the information easily for England.  It was not the same locating the information for Scotland.

Responses

Response from Kirsten Dickson, Quality Improvement and Assurance Facilitator, Quality Improvement and Assurance Team, NHS Grampian 14 months ago
Kirsten Dickson
Quality Improvement and Assurance Facilitator, Quality Improvement and Assurance Team,
NHS Grampian
Submitted on 03/03/2020 at 17:38
Published on Care Opinion at 17:38


picture of Kirsten Dickson

Dear Bulwark,

Thank you for sharing your experience with us. I’m sorry this has been anything but a straight forward process for you and that communicating with the various teams around the sharing of your data has led you to feel disrespected an insignificant. This can’t have been easy when dealing with cancer too.

I don’t work with the Information Governance Team but with have shared your experience directly with them. You have highlighted many interesting points and changes that could be made to help you and other patients feel, at the very least, a little more informed. I learned a lot from reading your story and expect many others will too.

As far as I am aware Care Opinion stories aren’t shared with ISD Scotland. Can I ask if you have already shared this with them?

Hopefully the information Governance Team will provide a response soon. If there is anything I can do in the meantime to help, you can contact me on: kirsten.dickson@nhs.net or 01224 558404.

Take care,

Kirsten

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
Response from Kirsten Dickson, Quality Improvement and Assurance Facilitator, Quality Improvement and Assurance Team, NHS Grampian 14 months ago
Kirsten Dickson
Quality Improvement and Assurance Facilitator, Quality Improvement and Assurance Team,
NHS Grampian
Submitted on 05/03/2020 at 11:42
Published on Care Opinion at 11:42


picture of Kirsten Dickson

Dear Balwark,

NHS Grampian has a new Head of Information Governance who would be happy to look into your concerns. If you feel this would be helpful can I ask that you contact me by email (kirsten.dickson@nhs.net) or telephone (01224 558404)?

Take care,

Kirsten

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by Bulwark (a service user)

Hello Kirsten,

Thank you for your responses. In answer to your question, I have not bothered raising the general issue formally with ISD directly again as I did not find their responses helpful when I communicated with various people last year. I actually found it all got too confusing for me at that time.

I have raised this subject with Information Governance previously as indicated in my story. My confidence in such services are low, however I will contact you and see what Information Governance now say on the matter.

I think it would also be helpful if relevant ARI Services aimed to inform patients about the registry before the event. This would not need to be resource intensive, for example, giving patients a leaflet and publicising it on the actual webpage mentioned in my story above.

Regards,

Bulwark.

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