Because patients need to know that what they say to their GP is private. That they can trust their GP – and any other medical practitioner – not to pass on information or let anyone else see their records without consent.
For many people, their GP is the only immediate source of help and advice – especially if they live outside urban areas without easy access to other services. They visit the doctor about everything from throat infections to incontinence. To talk about erectile dysfunction or concerns about a family member’s mental health. Even more than that, they can discuss personal problems like domestic violence, pressure at work or anxiety about their child’s behaviour.
Patients trust their doctors and it’s vital that they carry on trusting them. They must be able to presume that what goes on in their visits is confidential. They need to know that they are in control of their records. That they will be asked for consent before anything in them is shown to anyone else.
If patients can’t do this, they will stop telling their GPs the really personal stuff. They will watch their words. They won’t pause in the doorway and say, “By the way, doctor, it’s probably nothing, but…”
Right now, medical confidentiality is under serious threat. The whole structure of the NHS has changed and there’s far more emphasis on centralising and sharing information. There are plans to merge each person’s medical and social care records into one single, over-arching record. Information about each patient is going to be extracted from GP surgery systems and used in running the administration of the NHS. It will also be given to researchers. Data about patients is a valuable commodity that can stimulate the pharmaceuticals market and encourage developments in medicine and IT.
But what the architects of these new schemes see only as ‘data’, patients see as highly personal information about themselves. It’s about the things they may choose not to tell even their closest friends and family.
Respect for patients’ dignity – and the law – demands that they know exactly what’s going on and are given real choices before their medical details are used in any way.
It’s not good enough for strangers to say: “We will take your information and use it as we see fit – unless you tell us not to.”
Nor is it good enough to say: “But we have good intentions.”
The question should be: “Please may we use some of your information?”
If this doesn’t happen, patients can no longer be sure that what they tell their GP is private. They will lose trust in their doctors and decide there are some things it’s best to keep quiet about.
And how does that help anyone?
Founded in January 2013 by a number of existing organisations – Privacy International, Big Brother Watch, NO2ID, FIPR, TheBigOptOut, Terri Dowty (former Director of ARCH) and Phil Booth (former National Coordinator of NO2ID) – medConfidential began as a direct response to the imminent and serious threat posed by radical changes* in the way two new arms-length bodies, the NHS Commissioning Board (‘NHS England’) and the Health and Social Care Information Centre (HSCIC), planned to extract and pass on patients’ medical information from NHS health record systems in England.
Incorporated in April 2013 as a company limited by guarantee with charitable objects, medConfidential is an independent, non-partisan organisation working with patients and medics, service users and care professionals, drawing advice from a network of experts in the fields of health informatics, computer security, law/ethics and privacy.
medConfidential believes there need be no conflict between good research, good ethics and good medical care. We campaign for confidentiality and consent in health and social care – seeking to ensure that every flow of data into, across and out of the NHS and care system is consensual, safe and transparent.
We are funded by the Indigo Trust, Joseph Rowntree Reform Trust, Legal Education Foundation, Luminate, Open Society Foundations and your donations.