West Hampshire Clinical Commissioning Group is one of four CCG areas in England that is taking part in the 'pathfinder' part of the national 'Connecting information for the health of the nation' programme.
The other CCGs are:
- Leeds North/Leeds West/Leeds South and East
- Blackburn with Darwen
As a pathfinder CCG, we are working with HealthWatch Hampshire, GPs, patient representative and a wide range of patient and public groups to test all the information that will be provided to the public about the programme when it is rolled out nationally and to make sure all the concerns and queries that people have about the programme have been addressed.
Thirty GP practices in West Hampshire have signed up as pathfinders to pilot the programme locally. This means they will:
- Test and feed back on the patient communication materials in advance of them being sent out to their patients during the pilot and then publicise the pilot programme to their patients
- Assess the impact on their resources and services as a GP practice
- Test how the opt-out process can be managed most effectively and efficiently for their patients and practice
- Take part in the pilot extraction of data through the GP Extraction Service to ensure that the extraction itself works appropriately and that no data relating to patients who have opted out of the programme is extracted in error
Do you have a question about this? Email us at firstname.lastname@example.org.
More than half of all GP practices in west Hampshire have become pathfinders in a pilot programme to increase the range of patient information that is collected across all NHS-funded services.
At the moment, the NHS has detailed information about the care that you - and patients all across the country - receive in hospital. The NHS needs to see the full picture of the care you receive so it can see where improvements can be made. To achieve this, the NHS is piloting a programme -‘Connecting the Health of the Nation’ - to collect detailed information about the care you receive in different settings, such as at your GP practice.
Why does the NHS share patient information?
The NHS in England uses information for different purposes. Firstly, to give you the direct care that you need. For example, if you are admitted to hospital, the doctors will need to know your medical history. Here in Hampshire, this information is collected through the Hampshire Health Record and the Summary Care Record.
The second reason for sharing information is for purposes beyond your direct care; for example, where your information may be used alongside other patients’ information in statistics and research. This information can be used to check that health and social care services are doing a good job, to provide the right services at the right time and to support researchers to develop new medicines and treatments. Information about your health and care can help to improve NHS services for all patients. For example, it can help the NHS to improve early diagnoses and treatment of illnesses, including cancer and heart disease.
This pathfinder programme to collect detailed information about the care you receive in different settings, such as at your GP practice, relates to information beyond your direct care.
How will I know if my GP practice is taking part in this pilot?
If your GP practice is a pathfinder and therefore taking part in the pilot programme, you will receive a letter and introductory leaflet through the post. These will explain the benefits of sharing your information, how it will be used and what safeguards are in place to keep your information safe and secure. They will also explain your right to opt out of sharing your information and an opt-out form will be included with the letter. Anyone who wants to opt out will be able to do so by posting the form using the pre-paid envelope provided or returning the form to their GP practice.
Practices taking part in the pilot will also be displaying posters and leaflets about the programme in the Reception areas and may also have information on their websites.
When will this information be collected from the pathfinder GP practices?
Information will be collected from all the GP pathfinder practices a minimum of six weeks after their patients receive their letters. This is to make sure patients have enough time to read the information and make an informed decision about whether they want to be part of the programme or would prefer to opt out. It also provides sufficient time for GPs to record any opt out decisions on their systems.
The programme will only roll out more widely when the pathfinder stage has been evaluated and we are sure the approach we are taking is the right one.
Exactly what information will be extracted?
Information from GP records will be collected by the Health and Social Care Information Centre (HSCIC), the national body appointed by government to collect and analyse information about health and care in England.
If you haven’t chosen to opt out, the HSCIC will collect your NHS number, date of birth, gender, postcode and ethnicity. We need some of this information so we can connect your GP records to information from other parts of the NHS where you have had treatment.
The HSCIC will also collect information recorded by your GP in the previous four months about your prescriptions, referrals and diagnoses (such as diabetes, heart disease, stroke, cancers and asthma). GPs already record this information using a series of codes (for example, code C10E for diabetes). We will collect this coded information only. We will not collect free text notes such as details of conversations you have had with your GP.
We will NOT collect your name, full address and telephone number or details of sexual orientation, marital status, employment, use of illegal substances, sexually transmitted infections, domestic violence, convictions or terminations.
Who will be able to see this information?
During the pathfinder stage, there will be an initial restricted period where only a very limited number of approved analysts will be able to access the connected information from hospitals and GP practices in a Secure Data Facility at the HSCIC.
This will allow the HSCIC to assess the quality of the information and to provide guidance to organisations to aid understanding and interpretation of the information once it starts to be used more widely.
Decisions about whether to share patient information are based on what it will be used for and not based on the type of organisation requesting the information. Information can only be shared if it will benefit health and care and will never be shared with organisations that wish to use it for solely commercial purposes, such as insurance or direct marketing. A private healthcare provider may therefore receive information for health research purposes but it would not be allowed to use it for insurance purposes.
When this information is connected together with everyone else’s health information it will provide, for the first time, a national picture of what is happening in our health and care services across the country and across a wide range of health conditions.
I opted out of the programme in 2014 – does that still apply?
If you opted out of this programme when it was launched in the spring of last year, your opt-out is still in force and you do not need to opt out again.
Regardless of whether you did or did not opt out of the initial programme when it was launched last year, no data has been extracted yet as the programme did not reach that stage.
There is a lot more information available about this programme online.