Judith Hulf, GMC Director of Education and Standards talks about what the GMC expects from doctors around the NHS England care.data programme.
NHS England’s Care.Data programme is fast becoming the current health hot topic. Issues around confidentiality and how patient data will be used have got commentators, medical professionals and politicians taking to the airwaves and social media to argue the pros and cons.
No one can deny that the intentions of the programme – to improve healthcare by sharing information around patterns of treatment and patient health – is a positive thing. So why does it seem to be generating so much publicity – particularly as patients have the right to opt-out of the programme?
From a patient’s perspective, the doctor-patient relationship and the inherent confidentiality have always been clear. Patients believe, and rightly so, that, within clear boundaries, what is discussed and noted within the four walls of the doctor’s surgery remains private.
For their part, some doctors have already made it clear that they intend to opt their patients out of the system en masse.
So, what does the GMC expect from doctors in this situation?
The GMC’s guidance is clear: doctors must act within the law. In this particular instance, the transfer of this information is a legal requirement unless a patient has opted out. The Government reinforced this legal obligation on doctors. The law also requires this to be done fairly and our guidance for doctors explains that patients should be informed about how their information will be used and protected and how they can opt out.
We understand that patients rely upon doctors to guide and support them in making decisions about their health. Doctors should be helping patients understand the implications of the Care.Data programme and explaining that they can opt out if they wish.
NHS England is sending leaflets to patients’ homes across England along with posters and leaflets to all practices. It is up to the doctor to decide whether this gives the patient enough information or whether there is any more they can do, for example putting information on the practice website or through local community groups. Our Confidentiality guidance offers advice to doctors on how to inform patients about how their information is shared within the healthcare team.
This data will help to plan healthcare provision for the future, creating better services and improved healthcare for patients. However, programmes such as these are not without their issues or their ethical dilemmas – for patients and professionals alike.
If you need additional advice on how to support patients through the process, representative bodies like the BMA and medical defence organisations are there to help you take some of the heat out of this hot topic.