As a part of the NHS, we need and want to share data in various ways but we also want to protect your confidential and personal information. Data about health can be used for various reasons, both internally within the practice, and externally with various services.
Internally we analyse our records so that we know who has diabetes, heart disease, etc. so we can arrange regular recalls etc., and who is on which drug so we can alert you if there is a health warning etc. This is normal good medical care.
Externally we share data with other NHS services, either in anonymous, aggregate form, or in a way that identifies individuals;
- Aggregate data might be information about numbers of patients with a stroke or vaccinations, so that the NHS can provide appropriate services.
- Identifiable data might be the letters we send to hospitals about you. Here we attempt to describe some of the ways data is shared with external agencies.
- Anonymous data relates to data that is about an individual but that any identifying data is sufficiently obscured as to make it impossible to identify them.
Hospital letters (Identifiable data):
Whenever we refer you to hospital or another provider, we routinely send the referral letter, but also add standard information regarding your current medication, your significant medical problems, allergies, relevant information such as height and weight, as well as your contact details (name DoB, address etc).
This is essential so that the hospital is informed of your medical background and helps reduce mistakes.
Insurance Companies etc. (Identifiable data):
Insurance companies ask us for reports in two formats. A general request asking for a standard and nationally agreed set of data, (medication, allergies, medical problem list, blood results etc) and then tailored reports asking about a specific condition that you maybe claiming for.
We always insist on written consent to release this information and you may see the report first if you wish. Insurance companies may also request a “medical examination” where we act on behalf of the company, to assess their risks.
Solicitors and medical claims. (Identifiable data):
This is when we are asked by solicitors for medical information on your behalf. Increasingly this is a request for your whole notes and you need to be aware that all records will be sent.
Alternatively they ask for details following a particular incident (such as a car crash) which we write specifically in response to their request and limit the information to the specific question. Both requests require your consent although solicitors are legally bound to only work on your behalf.
Sharing within the NHS:
Data has been used for many years to assess health needs. Information of vaccination rates, disease prevalence (such as numbers of diabetics, heart disease patients, etc) are collected as well as data about age, sex, appointments.
QOF and Enhanced Services (Aggregate data):
As part of the mechanism for being paid, the practice has to provide data about various diseases to the government to demonstrate good care. This include the number of patients with various diseases, (Diabetes, hypertension, smears etc) as well as care indicators like the number of patients with a BP taken and under a certain level.
Again no patient identifiable data is uploaded, just numbers. However every year we might be inspected to verify these bits of information, which means an inspection team (of doctors and nurses) visits the practice to check the records of specific patients. This is not looking at you but to check we have done what we said we have done.
ACG (Aggregate but potentially identifiable data):
In order to help the practice and the commissioners of services understand where demand comes from we currently upload data to a service called the ACG. This has looked again at data from the practice as well as from hospital information to assess the likely demands on the system.
This can involve stratifying the population into different risk groups (those who may end up needing care in the next months and years).
Eclipse (anonymous data but identifiable by clinicians):
The Newbury and District CCG have purchased a system called Eclipse which extracts data from the GP system of all surgeries in the area. This is uploaded to a secure database where area wide searches can be performed identifying particular hazards or situations. It is intended to develop into a platform for managing chronic diseases such as Diabetes and COPD etc. You can opt out of this if you wish.
SCR (Identifiable data):
This is a national database (Summary Care Record) that is intended to provide basic health information to all providers who need it. It is intended that your demographics as well as basic medical information would be stored and made accessible to anyone needing it within the NHS. You can ask to “opt out” of the SCR if you wish by asking the practice to amend your records.
Q Research (Anonymous data):
The University of Nottingham in conjunction with our clinical software supplier have established a research database of GP records to which we contribute. This extracts the basics of your records in a completely anonymous format to a secure database in Nottingham and has been used for many groundbreaking bits of research including heart and diabetes risk scores which we now use in practice.
In 2013 the government has proposed to anonymously extract large sections of data from GP practices to form a national database from which they intend to analyse health needs across the country but also down to local assessments. This has not yet been implemented and we need to wait to see the details. However if implemented we do not have a choice about this extraction and it will be universal, to help support NHS planning. There are two proposed levels of data, that which is extracted from the surgery and stored centrally by the NHS Information Centre (NHS IC) and then anonymous data that will be extracted nationally by the NHS IC, and then potentially passed onto third parties by the National Information Centre.
The data is not partially identifiable as originally told to us by central NHS, but fully identifiable when extracted from the practice to enable linkage to other data. It is then anonymised before passing on to third parties.
Further Updated 16/1/2014 as NHS England beleive this to be incorrect, even though their leaflet here says “Identifiers (DOB, postcode, NHS number and gender) are required to link the GP data with PCD from other care settings in order to analyse patient care across pathways. ” are extracted.
The care.data program has been suspended for 6 months until autumn 2014 following a wide ranging campaign primarily aimed at the information provided for the program. GPs, RCGP, GPC and privacy campaigners have raised concerns about the level of information provided by the NHS IC and therefore the program has been delayed by 6 months “to allow further discussion and publicity” to be conducted. Although we feel there is significant benefit of the care.data program we welcome the opportunity for patients to be fully informed.
Two exceptions to data extraction remain, though are perhaps outdated now, sensitive data that cannot be extracted by law are covered under the
Human Fertilisation & Embryology Act http://www.hfea.gov.uk/3479.html#guidanceSection4030
Venereal Disease Regulations http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1011965/?page=1
Connected Care in West Berkshire
West Berkshire CCGs have collaborated and are rolling out a program across West Berkshire enabling clinicians to see your records, with your consent, when you need clinical care. Initially in Westcall Out of Hours service but then progressively across hospitals and secondary care, you may be asked if the doctor or nurse can access your GP records. With permission your records will be displayed (not downloaded) on their system so that if you are seen then can see up to date summaries of your GP Records. In time we will be developing a portal where both GP records and hospital records will be visible together unifying access to your notes, and hopefully including social care entries as well. This is a very exciting development and one we hope will bring real benefits for your care.
It is possible to “opt out” of data sharing if you wish. Ask at reception for an opt out form. This would apply to the ACG, SCR, and Eclipse data sharing processes. For specific instances you will be asked for consent from solicitors and insurance companies although consent is per request only.
Use this form if you wish to refuse data sharing. Please open, indicate your preferences and post/deliver to the surgery. Data-Sharing-refusal
This Powerpoint presentation was made to practice patients on 16 7 2013
Map of the control-codes that preclude various sharing principles (As simple as I can make it!)
The official pages for care.data are here
An alternative view written by a GP is here