Before everyone starts their summer, here are a few ‘tied-up loose ends’ that had previously been left dangling.
Your GP records: If your GP uses TPP or EMIS, you can today begin to see how your data has been accessed. Neither TPP nor EMIS yet cover their research databases, but they will have to shortly because of the findings of the Caldicott Review.
Caldicott Review: The Government has finally responded to Dame Fiona Caldicott’s 2016 Review. It has committed that you will be able to see how your records have been used, both for direct care and all other uses. This will be phased in “by 2020”, mostly (we hope) in 2018. If you have opted out, you will be written to about any changes before they happen. Our longer response is now up.
Google DeepMind broke the law by copying 1.6 million medical records, according to the Information Commissioner – and the company was rebuked by its own Reviewers. medConfidential’s complaint was found to be true; Google’s statements, not so much.
Your DNA: The Chief Medical Officer has opened a “national conversation” about the future of genomics. This starts with patients who have unknown cancers or rare diseases, who may see significant benefits from genomics. But it involves two questions, which boil down to: “Can we do this for your care?” and “If we don’t get an answer now, do you want us to keep your details in a research project which might give you an answer sooner? If not, we’ll run the test again in a year or two.”
There should be no difference to the person’s immediate care, and each patient is given a reasonable choice. If this can be done for cancer genomics, it can clearly be done elsewhere. We would have included a link on how to feed back your thoughts on the CMO’s Report and next steps, but there isn’t one.
Patient views on Research: The “Understanding Patient Data” project has run some workshops looking at privacy or research. The blatantly faulty premise of this work is exposed by the Information Commissioner, who has stated: “It’s not privacy or innovation – it’s privacy and innovation.” Had UPD included us in any of their planning, we’d have pointed that out.
The GP IT provider TPP: The trial of functionality to allow GPs using TPP’s systems to properly execute their responsibilities to patients should conclude shortly, and – assuming no major problems are found – be rolled out to every GP that uses TPP. With other changes eventually being correctly implemented, this should reassure all sides.
As part of this process, TPP’s notoriously litigious founder instructed lawyers to send us a “reputation management” (defamation) letter, which also said that TPP had no desire to respond to medConfidential.
Public Health England is still in denial about its data and consent troubles. Its officials consider themselves part of your cancer care team, despite very few patients having any idea who they are, or why this should be. Beyond the institutional desire to ignore and distrust the Caldicott Consent Choice, what will change?
PHE’s problems are far wider than just consent, but it is a good place to start. Yet another Review is due to be published soon. Will the disease registries move under the NHS umbrella, or will PHE continue to refuse reform – and if so, will you know how your data gets used? Transparency is not the same as respect for confidentiality, but it does make ignoring confidentiality only possible by being dishonest.
Funding: We are very grateful indeed to the Joseph Rowntree Reform Trust Ltd for awarding us a further year’s grant, covering 80% of our core funding, that will enable us to continue working towards consensual, safe, and transparent data flows in the NHS – and to defend human rights in the face of your data being copied without your knowledge or approval.
Brexit: As Brexit Britain draws closer, and having already introduced measures that try to make NHS staff hassle brown people for documentation, the NHS now faces a three-way stand-off – a ‘Brexit Triangle’: does the Department of Health now direct NHS staff to hassle everyone who looks or sounds ‘foreign’, or to hassle absolutely everyone, or do we give in and issue everyone with ID cards?
We may not know the outcome – but we do know that, armed with facts, every patient can speak with the authority of their own lived experience of the NHS. Please do keep informing yourselves, and informing others. Maybe you could share this newsletter with them?
What’s next? We hope you enjoy your summer. We have quite a lot to do, getting ready for when Civil Servants and Parliament return in September. Our NHS friends are, of course, working all through the summer. We wish them, and you, well