Details from your medical record will be extracted in a form that can identify you – including your NHS number, date of birth, postcode, gender and ethnicity – as well as your medical diagnoses (including cancer and mental health), their complications, referrals to specialists, your prescriptions, vaccinations and screening tests, your family history, your blood test results, your body mass index and your smoking/alcohol habits.
The information uploaded will be used for purposes other than your direct medical care and the intention is to make it available – with some of the identifying information removed, but not always – to organisations outside of the NHS including universities, commercial companies, medical researchers and ‘information intermediaries’.
The NHS Constitution says that patients can simply instruct their doctor or GP practice to stop the transfer of information from their own medical record, and information from the records of those for whom they are legally responsible, e.g. children. You don’t have to make an appointment to do this – you can write a letter or ask at reception for a form for opting out of Care.data.
Official information is somewhat limited; the ‘Better information means better care’ leaflet that may have dropped through your letterbox does not even mention care.data.
The staff at this practice record information about you and your health so that you can receive the right care and treatment. We need to record this information, together with the details of the care you receive, because it may be needed if we see you again.
We may use some of this information for other reasons, for example, to help us to protect the health of the general public generally, to plan for the future, to train staff and to carry out medical and other health research for the benefit of everyone.
We are currently involved in research studies for which we provide anonymised information from patients’ notes. The risk of you being identified from this information is extremely low as all directly identifiable details (name, address, post code, NHS number, full date of birth) are removed from your notes before they are collected for research, and automatic programs to de-personalise any free text (non structured or coded data) are run after information is collected. Individual patients’ records are added into a much larger anonymous database, containing records from millions of patients across the UK. This information is used by researchers outside this practice. The database to which we contribute anonymised records is known as The Health Improvement Network (THIN) . This data may be anonymously linked to other data, such as hospital data. This database is managed by a company outside the NHS which does not have access to your personal details, only to anonymous medical records. The data are used for research into such topics as drug safety, disease patterns, prescribing patterns, health economics and public health. Many of these studies provide useful information to medical staff on diseases, the use of drugs or outcomes of disease or treatment.
These studies may be performed by academic researchers or commercial companies amongst others. However, no researcher has access to your full details such as your name and address, initials or your full date of birth. The researchers are not given information about the GP nor the practice name, address or post code.
If you would like to opt out of this data collection scheme, please let your doctor know and no data from your records will be collected for use in research. This will not affect your care in any way.
If anything to do with the research would require that you provide additional information about yourself, you will be contacted to see if you are willing to take part: You will not be identified in any published results.
A list of published research using the THIN database can be found at http://csdmruk.cegedim.com/THINBibliography.pdf or please contact Michelle Page on telephone number 0207 554 0663 or email firstname.lastname@example.org for a paper copy.