It would appear that the DH are entering into financial relationships with private companies to sell our medical records.
Every time you attend a hospital appointment/admission your identifiable medical records are sent to BT (the telephone company) and the SUS database. BT then sends your details to the DH, DH Information Centre for Health and Social Care, PCTs, Strategic Health Authorities, and Dr Foster, We have now found out that the Information Centre for Health and Social Care has entered into financial arrangements with private companies and academic organisations to give your SUS medical records to them too. In time, when NHS Care Records are up and running, it will not just be hospital records that are sent but also pharmacist records, GP records, HealthSpace records, Community Nursing records etc. In fact all your medical records from whoever you see in NHS will be sent to BT and the SUS database, and then on to other orgainisations.
We discovered that SUS records were being given to private companies when reading the June 2007 Minutes of the DH Patient Information Advisory Group. It’s well known that the Information Centre, a Special Health Authority that manages DH information, has entered into a financial relationship with Dr Foster. However we were horrified to discover that this has been extended to other private companies. One company involved is called Newchurch. However it states in the PIAG minutes that arrangements have been made to give SUS data to additional third parties, both private firms and academic organisations (eg. NCHOD at the Oxford University). Newchurch admits on its web site that it has formed a relationship with the NHS. The medical records that will be sent to it appear to be from SUS, and we will be starting a campaign about SUS in the very near future. The DH are saying that Newchurch will only get anonymised or pseudoanonymised data, but we have no confidence in these claimed mechanisms and in any case our medical records are still being sold by the DH without our consent. What other private commercial companies and organisations will the DH sell our medical records to?
The Information Centre states in the PIAG June Minutes that they are taking legal advice on the use of our medical records by private companies. Mr Phil Walker, Deputy Director of Information Policy at the DH (the department responsible for medical confidentiality at the DH) admits in a PIAG document on long term medical conditions that there is no secure basis in law for the use of SUS data. Hence the DH apparently know what they are doing is dodgy.
Another worrying issue is that if you open an Advance Account at Health Space or if Pharmacists are given access to the NHS Care Records then any information you place on HealthSpace or that you tell your pharmacist will sent to the SUS database and sold on.
Your demographic details are also apparently being given to MORI a private market research company (these details include name, address, GP details, NHS number, and even ex directory phone number). Again this is being done without patient consent and could have serious consequences for victims of domestic violence and people in witness protection schemes. The reason is so they can contact you to complete a GP questionnaire! Once again there is no opt out. This agreement with MORI was entered into by the Information Centre.
There is a wider public health issue here too. If patients feel they can no longer trust the NHS with their medical records and start withholding information from their doctors, then it will damage their care – and even if this doesn’t worry the researchers, they should worry that it will also bias their research results, making them unreliable. Patients are already telling us that they withhold information from their doctors. Patients need to be able to opt out of SUS to ensure that health research is erthical, ensure that the doctor/patient relationship is protected and to be in control of their own medical confidentiality.
A DH Solicitor has written to TBOO that the NHS needs to share records and if you do not consent you cannot be treated; furthermore that a patient refusing consent for them to use their records is not being denied care. I would argue that the DH are really saying is anyone who does not agree to this unlawful use of their medical records and to the DH to selling their SUS medical records to private companies and academic organisations will be be denied access to medical care. This is contrary to my Adjournment Debate where Caroline Flint former health Minister stated the DH did envisage any patient being denied care who is not the database.
We will, of course, be following this situation closely at TBOO.