There has been lots in the press recently about the NHS Care.Data programme. For clarity: NHS Care.Data – this is the programme that will extract Personal Confidential Data from the GP record, anonymise it and then use the data to improve public health. This is not to be confused with: Summary Care Record – this is details of medications, allergies and sensitivities uploaded to the Summary Care Record so that these details are available to health care professionals when GP surgeries are closed. Or Enhanced Data Sharing for SystmOne – this is asking patients for consent to share their records so that teams of health care professionals directly involved in their care have the opportunity to see one another's records of that care when appropriate. The Care.Data programme will benefit patients by:
- Finding more effective ways of preventing, treating and managing illnesses
- Making sure that any changes or improvements to services reflect the needs to local patients.
- Understand who is most at risk of particular diseases and conditions and provide them with the highest quality care available.
- Improve understanding of the outcomes of care, give patients greater confidence in health and social care service.
- Identify who could be at risk of a condition and would benefit form particular treatment .
- · Guiding decisions about how to manage NHS resources so that they can best support the treatment and management of illness for all patients
But patients and professional groups have expressed concern about the programme. Earlier this week the programme was ‘paused’ to enable more time to explain how patients data will be protected, the benefits of the programme and what the data will be used for.
Patients are concerned about the security of their data, that it will be kept safe, that their anonymity will not be lost and that their data will not be used by private companies for profit e.g. insurance or drug companies.
This weekend several papers reported that the Health Secretary will announce next week that the NHS will be legally barred from selling personal medical records for insurance and commercial purposes and that criminal sanctions will be bolstered for organisations that breach data protection laws.
It's important that you understand the difference between these three different systems. NHS Care.Data is an extraction service that will benefit the public good but is on hold at the moment. The Summary Care Record and Enhanced Data Sharing for SystmOne will benefit patients individually because by enabling sharing information it will enable health care professionals who look after you have a clear picture of your medical history.
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