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sharing your medical records
You may recently have had a letter from Trafford Primary Care Trust telling you about a scheme they are setting up which will allow your records to be seen by people other than your GP. This is not something our practice has been involved in at any stage.
Below is a little more information which you may find helpful in making your decision as to whether to allow your confidential records to be seen by others.
The national scheme
This is part of the multi-billion pound government IT project which is some years behind schedule and well over budget. It would mean the health records of everyone in the country being uploaded to government computers for permanent storage. GP surgeries, hospital departments, social services etc would be able to access the records, either all or in part. This project has become mired in technical failings and financial overspending. Although a "spine" exists with demographic data for everyone in the country, the full electronic record has not been rolled out nationally and at the moment we are unaware of any set date for this.
The following is an extract from the letter sent out from Trafford PCT recently:
"The National Summary Care Record (SCR) will be available to healthcare staff providing you with NHS care anywhere in England. At first, it will contain key health information such as details of allergies, current prescriptions and bad reactions to medicines. After that, each time you use any NHS health services details about any current health problems, summaries of your care and the professionals treating you may be added to your SCR. Your SCR will be of most benefit if you need health care in an emergency or if you are away from home in England and need treatment."
Undoubtedly, this could be useful if your records need to be accessed by for instance, another GP if you are away from home, or if you have to attend A&E at night etc.
Security of the stored records has however been a major concern and as far as we are aware this has still not been fully sorted out although it is a stated priority for the administrators of the scheme.
the trafford scheme
In contrast to the national scheme, the Trafford scheme only applies to Trafford residents using Trafford services.
Trafford Primary Care Trust recently wrote to all Trafford GP's. The following are some extracts which explain what they are proposing to set up:
"The Trafford GP data sharing project was initiated with the overall aim of finding a technology solution to enable the sharing of clinical primary care data in order to deliver better care and improved health to the population of Trafford. The project is founded on the principle that this data is rich in health information which could be utilised to enhance the care of individual patients as well as providing a valuable source of anonymised data for commissioners of health services"
" Coded data will be streamed or extracted (dependant on the system selected) from GP practices’ clinical systems to a central ‘hub’, where it can be shared, processed and analysed. This would be done on a frequent refresh basis. Specific defined Read codes for excluded medical conditions will be prevented from being shared.
‘read only’ access to a summarised view of the primary clinical record (will be) viewable only with specific patient consent to named clinicians providing care to them. Early stages of the project will introduce clinical information sharing with Trafford Out of Hours (OOH) providers, however this functionality will become an important element of the developing Integrated Care System (ICS) and the establishment of a Trafford wide Electronic Health Record (EHR)"
This "information sharing" has not been done anywhere else as far as we know.
There are times when the ability to view your summary record could be useful - For example, if you attend a Trafford A&E deaprtment ( Wythenshawe is not included as far as we are aware) It could also be useful for the Out of Hours Service to be able to see your record summary.
The PCT document specifically states that you will have to be consulted as to whether a clinician can have your permission to view your record summary. This is good.
However, it appears that a large part of the use of the data shared seems to be as a "valuable source of data for commissioners of health services". Access to your health records will be given to relevant clinicians, public health specialists and PCT data analysts.
The PCT explain further:-
"pseudonymised data (will) be analysed for the purpose of defined public health target activities. Where this data is analysed and risk groups identified, the information will be fed back to practices. This will be known as Public Health Outreach and an example would be cardiovascular risk screening programme. The data will also allow the development of registers of high risk vulnerable groups with the option to develop active case management of these individuals"
We are not fully clear as to exactly what use your health records will be put by "PCT data analysts". Nor are we sure what the consequences of this data analysis will be.
Currently, your medical record is held securely by your doctors and your confidentiality is of the utmost importance to us.
We hope that we will be given much more information and reassurances about the use to which your records would be put.
We hope we can also be reassured that your confidential data will remain safe at all times as
if one day your data is taken from our practice, we will no longer be able to personally keep your records safe and secure, we will be relying on other people.
It is sad to say that NHS IT projects have a very poor record on data security.
The PCT have provided a helpline number for you to ring if you have concerns.
The number is: 0835 603 8510.
If you do not want to opt out, you need do nothing. As we understand it, our practice is likely to be approached to join the scheme within the next 12-18 months.
If however you wish to opt out you can download the forms below (word format) and drop them off to the surgery. Alternatively, forms are available from reception.
OPTING OUT
Opt out of both NATIONAL and TRAFFORD sharing schemes.... click OPT OUT OF BOTH .
If you wish to opt out of only the NATIONAL scheme.....
click OPT OUT OF NATIONAL ONLY.
Finally, if you wish to opt out of only the TRAFFORD scheme..... click TRAFFORD ONLY.
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Sharing Your Records
 Are you happy to share your medical records outside the practice?
There are two schemes which require you to do so. (See article)
Our practice has had nothing to do with setting up either scheme.
Trafford PCT have a helpline to promote the scheme on 0835 603 8510.
If you wish to officially opt out of either scheme,
click here.
If you are happy that your records may be shared, you need take no action.
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