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.
"Use of identifiable information without consent"
About: NHS Grampian NHS Grampian
Posted by Bulwark (as ),