Thanks for this; it's fascinating and it's difficult for me to understand
how this would operate in practice. What if information was suddenly
needed by a doctor for another case and the patient has died? What if the
patient was comatose and the information was needed to save hir life? What
if something was court-ordered for one reason or another? Here in Rhode
Island I use something called the 'patient portal' which seems to have a
very low degree of protection; it's also gone down a number of times
(something I think endemic to RI). On the other hand, it's useful to me to
the extent that I've had at least 40-50 back and forth messages to the
medical staff. I wonder how this would play out through any blockchain
ledger.
Thank you so much for all the background information!
Best, Alan
On Tue, 5 Jun 2018, Edward Picot via NetBehaviour wrote:
Alan,
I'm sceptical about it too. For one thing paying for medical care is still
private medicine, even if the payment in question is made via a new type of
e-currency. But it's also unclear from the article exactly how much the
blockchain will be involved in medical record-keeping - is the patient's
medical record in its entirety actually going to be inscribed on the
blockchain, or is the blockchain just going to act as a ledger of how many
times the record was accessed and updated, and by whom? I suspect the latter,
because the former would probably make for painfully slow response-times; but
I've looked at the Medicalchain website and their 'Whitepaper', and I'm still
not clear.
They seem to be trying to position their blockchain-authenticated version of
the medical record as an alternative to the prevailing 'paternalistic' model,
where although patients are nominally entitled to full access to their own
records and a right to veto other people accessing them, in practice those
records are kept and updated by other people (the GP, the hospitals,
out-of-hours services etc.) and other people (notably the Department of
Health) access them willy-nilly without any patient consent. Medicalchain
that under their model, the patients will have complete control over their
own notes, and nobody else will be able to access them (or update them)
without the patient's consent.
Concerns about other people accessing your medical notes without your
knowledge or consent are legitimate. About four years ago NHS England
launched a project called Care.Data which basically siphoned off an immense
amount of data from the patient notes held in doctors' surgeries, linked it
to data held about the same patients in hospitals, 'anonymised' it, and then
offered offered it to other agencies for 'research purposes'. The other
agencies might include people like insurance companies, from whom NHS England
hope to make considerable amounts of money in the shape of fees for granting
access to the data. And the data wasn't as 'anonymised' as NHS England
claimed, because it soon emerged that if a patient had something like a rare
disease or a rare blood group, he/she could be quite easily identified from
the data being offered. Originally NHS England were going to run this whole
scheme without letting anybody know about it; then, at the last moment, they
decided to pass the responsibility for letting people know about it to GPs,
who were completely unprepared; then the Information Commissioner's Office
found out what was going on, and told NHS England they'd got to take
responsibility for informing people about the scheme themselves; then the
papers got hold of it; and within a couple of months the scheme was closed
down. But not before it had been demonstrated how blithely the Dept of Health
is prepared to ignore patient confidentiality if it suits its own purposes.
And even though Care.Data has been stopped, there are still numerous
data-extractions from the various 'silos' of electronic patient records
taking place every day, for one reason or another, usually without the
patients knowing anything about them - a lot of them, it must be said, for
entirely creditable purposes like research into diabetes and cancer.
But I'm not sure that patients having control of their own notes is the
answer. Most patients don't like having adverse information about themselves
placed on record. There are enough cases of people with diabetes who refuse
to acknowledge that they're really diabetic, or people who used to smoke who
adamantly deny that they ever touched a cigarette, not to mention people who
drink well over the recommended limits but insist that they stay well inside
them, etc. But the real problem comes if you're dealing with people with a
history of drug abuse, violent behaviour, child abuse, psychosis and so
forth. Actually you need to share the medical record between patients and
their clinicians in some way, so that patients have access to their records
and can query inaccuracies, but on the other hand grant permission to the
clinician to record accurate information, even if that information is
something they'd prefer not to be on there.
But leaving the ethics of the system on one side, most of these things come
down to questions of how efficiently the software works in practice. How
quick and easy-to-use will this blockchain system be for patients and
doctors? How easily will its architecture allow it to communicate with other
computer systems, or to take on board things like scanned documents or blood
test results, or to produce things like prescriptions or requests for x-rays?
At this stage it all remains to be seen.
Edward
On 03/06/18 19:56, Alan Sondheim wrote:
Hi, read about this as well as the comments which are somewhat skeptical -
I'm curious what your opinion is?
Thanks, Alan
On Sun, 3 Jun 2018, Edward Picot via NetBehaviour wrote:
A new telemedicine platform utilising blockchain technology will be
trialled
with patients in south-west London next month...
https://www.digitalhealth.net/2018/05/blockchain-enabled-telemedicine-servi
ce-to-by-piloted-with-groves-medical-patients/
New CD:- LIMIT:
http://www.publiceyesore.com/catalog.php?pg=3&pit=138
email archive http://sondheim.rupamsunyata.org/
web http://www.alansondheim.org / cell 718-813-3285
current text http://www.alansondheim.org/vk.txt
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New CD:- LIMIT:
http://www.publiceyesore.com/catalog.php?pg=3&pit=138
email archive http://sondheim.rupamsunyata.org/
web http://www.alansondheim.org / cell 718-813-3285
current text http://www.alansondheim.org/vk.txt
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