Ara Darzi strikes out bravely against privacy campaigners[1], pointing out that patient confidentiality can cause significant harm, and echoing Bruce Keogh’s even blunter warning that patients are dying because medical records are kept secret. If only we knew what we know. Yet the fashion for concealment is so entrenched that, as Prof Darzi acknowledges, obtaining public consent for data sharing with researchers will be a massive task.
Yet this is not just a problem for medical researchers. Since patients’ safety and wellbeing is at stake the fight for knowledge has implications for everyone concerned with healthcare.
It should cause us all to challenge our understanding of the doctor-patient relationship. It requires us to acknowledge unambiguously that in socialised medicine, epitomised by the NHS, we have exchanged the privilege of being a private customer with the benefit of sharing our risks and burdens equitably. It follows that individual rights, and even autonomy, must be balanced explicitly against the needs, and thus the rights and autonomy, of others. The role of the physician goes well beyond the individual patient to the health of all in their clinical setting and to the wellbeing of society as a whole.
In other words, if what is good for me is bad for you, it should be challenged. And, since my discretion can be to your detriment, this should surely lead us to question the basic concept of medical confidentiality.
What high principal is at stake that we are defending through data suppression; or could it be that we are going along with modish groupthink? In Norway tax returns have been made public since the 1800s, and it does not seem to have hampered the economy or the fiscal system, nor brought the walls of civic society crashing down. Why should my medical records be any different? Secrecy is secrecy even when dressed up in the more agreeable word ‘privacy’. And while there may, on analysis, be some issues that deserve to be kept secret – identifiable personal records of sexually transmitted infections, for example – it might also be that stigma about disease flourishes in the darkness of concealment. How refreshing it is that people now talk openly about cancer, and even disorders of their breasts and prostates, and yet how dispiriting it is that we still find it so hard to reveal psychiatric problems.
It would be a benefit to all if Ara Darzi’s contribution leads to a large and fundamental reassessment of whether wider sharing personal data should be regarded not as a threat but as a social responsibility.
Nick Ross
1 BMJ 25 July, p24 (BMJ 2015;351:h3853)
Competing interests:
None relevant. The author is a member of the RCP’s committee on ethical issues in medicine.
Rapid Response:
Show the public why they should share their data
Sir,
Ara Darzi strikes out bravely against privacy campaigners[1], pointing out that patient confidentiality can cause significant harm, and echoing Bruce Keogh’s even blunter warning that patients are dying because medical records are kept secret. If only we knew what we know. Yet the fashion for concealment is so entrenched that, as Prof Darzi acknowledges, obtaining public consent for data sharing with researchers will be a massive task.
Yet this is not just a problem for medical researchers. Since patients’ safety and wellbeing is at stake the fight for knowledge has implications for everyone concerned with healthcare.
It should cause us all to challenge our understanding of the doctor-patient relationship. It requires us to acknowledge unambiguously that in socialised medicine, epitomised by the NHS, we have exchanged the privilege of being a private customer with the benefit of sharing our risks and burdens equitably. It follows that individual rights, and even autonomy, must be balanced explicitly against the needs, and thus the rights and autonomy, of others. The role of the physician goes well beyond the individual patient to the health of all in their clinical setting and to the wellbeing of society as a whole.
In other words, if what is good for me is bad for you, it should be challenged. And, since my discretion can be to your detriment, this should surely lead us to question the basic concept of medical confidentiality.
What high principal is at stake that we are defending through data suppression; or could it be that we are going along with modish groupthink? In Norway tax returns have been made public since the 1800s, and it does not seem to have hampered the economy or the fiscal system, nor brought the walls of civic society crashing down. Why should my medical records be any different? Secrecy is secrecy even when dressed up in the more agreeable word ‘privacy’. And while there may, on analysis, be some issues that deserve to be kept secret – identifiable personal records of sexually transmitted infections, for example – it might also be that stigma about disease flourishes in the darkness of concealment. How refreshing it is that people now talk openly about cancer, and even disorders of their breasts and prostates, and yet how dispiriting it is that we still find it so hard to reveal psychiatric problems.
It would be a benefit to all if Ara Darzi’s contribution leads to a large and fundamental reassessment of whether wider sharing personal data should be regarded not as a threat but as a social responsibility.
Nick Ross
1 BMJ 25 July, p24 (BMJ 2015;351:h3853)
Competing interests: None relevant. The author is a member of the RCP’s committee on ethical issues in medicine.