The #NHSdatagrab debate highlights the need for self-sovereignty of our medical and private data
The contentious issue of precisely who owns, controls and shares our most personal health and private data has been brought to the fore by the recent #NHSdatagrab debate. According to Mark Shaw, CEO of Tento Applied Sciences, now is the time for all of us to gain a greater degree of custodianship, responsibility and understanding of our personal data and how it is used.
The UK Government’s General Practice Data for Planning and Research (GPDPR) scheme, which will allow NHS Digital to extract sensitive patient data from GP surgeries in England for research and analysis purposes, is proving highly contentious.
“The GPDPR scheme may well have been pushed back to September, but now is still the ideal time for all of us to take more interest in who can access our medical and personal records. The level of outrage amongst large sections of the British public was significant, with many expressing frustration at the lack of transparency and how little they knew about the plan,” stated Shaw.
“Adequately anonymised medical data is essential in helping health authorities develop treatments and plan for health emergencies. However, the real problem here is the lack of clarity about how the NHS will safeguard patient data, and exactly which third parties will be able to access it.
“Despite NHS Digital assuring the British public that they ‘do not allow data to be used solely for commercial purposes’, many critics remain unconvinced. Moreover, the fact that patients still need to opt out of this data-sharing plan (rather than opt in) has done little to assuage public opposition.
“Cybersecurity experts also have concerns. Even though the NHS Digital plan is to use ‘pseudonymised’ patient data, excluding any personally identifiable information (other than postcodes, in a coded form), there is still a serious danger of a cybersecurity breach. This is one reason why the British Medical Association has called for the scheme to be delayed ‘until patients and the public have had time to understand the programme and choose to opt out if they wish’.
“The most positive aspect of the #NHSdatagrab debate is that it shines a light on these issues. We firmly believe that individuals should have complete self-sovereignty over their medical data and all other important certifications that we need to live and exist in our increasingly digitised world.
“Giving individuals the freedom to access their documents and certificates in a simple, highly secure, digitised manner is the first step. The second step is granting governments, healthcare organisations and pharmaceutical companies access to the fully anonymised data they need for their critical tests and trials.
“It’s high time that we all took back control of our own data. In no circumstances should our medical information be shared, without restriction, to be monetised by big businesses: gaining a deeper understanding of how the GPDPR scheme works is essential. This is why our mission is to enable every person on the planet to own and control their medical and personal data, and to empower organisations and governments to put individuals first.”