[NetBehaviour] Fwd: Blockchain-enabled telemedicine service to be piloted with London patients

Alan Sondheim sondheim at panix.com
Wed Jun 6 06:19:19 CEST 2018

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 

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
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