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Central Care Record Debate - Information for your consideration

You are likely shortly to receive information from your CCG about the Central Care Record (CCR), a local project to share your patients' computerised medical records with other health and social care providers across Birmingham and Solihull.

The LMC supports any initiative to help improve the care of your patients, but, as you can anticipate, we do have a number of concerns about the proposal, which we would ask you to consider very carefully in order to inform your decision as to whether you support your CCG participating in your project and whether you would wish your practice to take part.

You will already be aware that the LMC does not support the "opt-out" consent model for the Summary Care Record (SCR) as we do not believe it allows patients to fully exercise informed consent for their confidential records to be shared.The plan for the CCR is again to use an opt-out rather than opt-in consent model, yet CCR allows for a far greater amount of confidential information to be shared than does the nationally-mandated SCR and with potentially a far greater number of other providers, including those outside the NHS.

The view of the LMC is that all patients must be told exactly what data is to be shared, with what organisations, for what purpose, and why it will be of benefit to them over and above existing arrangements and other planned developments (and we feel that the case for additional benefit is lacking in evidence).We do not believe, as a matter of principle, that implied consent is appropriate for sharing confidential patient data with other agencies who might only potentially be involved in their direct care in the future.This is a completely different issue to the implied consent when, for example, we refer a patient to hospital or elsewhere, so they are definitely involved in their care.Implied consent is also unacceptable for practical purposes as, for example, as we saw with the PIP for SCR, one cannot just assume that patients have received their letters and opt-out forms and chosen not to opt out.

Another issue is how do you determine who will be involved in the “local” CCR.Patients now have the right to be referred to any qualified provider anywhere in the country, so the pool of potential organisations with whom the information should be shared with is, virtually, unlimited. The question could be asked as to why "local" hospitals should be given "preferential" treatment? This could be open to challenge, particularly by commercial organisations that feel excluded and could equally argue it is in the interests of patients they treat, or could potentially treat in future.

Another concern relates to safeguarding.There is a real risk that information could actually be withheld from health professionals, particularly GPs, if it is know that it may end up being shared more widely.This could have unintended consequences and actually end up reducing, not increasing information sharing and be detrimental to safeguarding.

Dr. Robert Morley
Birmingham Local Medical Committee


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