I just read about this and I am like NO. How can anyone decide such a thing for me?
It's my blood, I am the one who has all rights to my medical history/records.
They say it helps pharmaceutical companies to make better drugs ,but I doubt it.
No. No no no. I can't accept this. No. This makes me feel naked.
I agree, Justiina.
Just thinking about it, though, and came up with the idea that perhaps we (in this case, you) should put a quid pro quo in place. You pharmaceutical companies must first open up all your records (research, technical, marketing, financial, etc.). Don't think there is the remotest chance of any of them agreeing to do so.
Is there no privacy these days, it would seem by laws that are being brought in not to benefit the people but Big Business.
The pharmaceutical may make better drugs but they do not need intimate information about people's health/illhealth.
It seems to be that levothyroxine was pushed by monetary means in order to eventually get NDT withdrawn (banned in many countries) - a hormone that contains more than T4 and those on this forum benefit from it but have to obtain through an outside source now.
How many on levothyroxine whose remaining symptoms are treated with 'other' medications instead of one that treats most of them by one daily dose. Of course, it fills the coffers of the pharma companies and those that permitted the withdrawal of NDT, now T3, so that patients have to source their own, or 'extras' in order to try to have some quality of life. So, if NHS, is providing the 'other' meds, the cost is probably more than an adequate hormone that eliminates the symptoms.
How much money has been given to Endocrinology Worldwide by those who benefit most from insisting that one-size fits all when we, on this forum, have had personal experience that it doesn't.
Ignorance by doctors of clinical symptoms not ensuring that all the thyroid hormones are at an optimum, or minerals/vitamins and who tell patients off when weight is gained, when the problem is the hormone and not the patient. Never mind the myriad of clinical symptoms which aren't resolved.
No, I don't want my and families medical records given willy-nilly to companies. Who knows that a neighbour may be one employed by them who might not be able to resist and divulge personal details to others (gossip).
Justiina,
In the UK patients have been able to opt out of 3rd parties accessing their medical records. Nevertheless my hospital records were apparently included in the massive data set sent to Google's Deep Mind. I wouldn't object to my records being available for medical research, even pharmaceutical companies if it helps produce better drugs, but I object to non-medical sharing with insurance companies for instance which is why I withheld consent.
Hey everyone! Any day now and it has been halted twice for some un known reason the government is going to release information to researchers from what I understand Medicare
ADVANTAGE PLANS AND IF YOU ARE ON An ADVANTAGE PLAN YOU CAN SELL YOUR STORY BUT YOU MUST DO SO BEFORE THE GOVERNMENT RELEASESE THE DATA MY QUESTION DOES ANYONE KNOW ANYTHING ABOUT THIS AND WOULD NON PTOFIT RESEARCHERS BE INCLUDED ALONG SIDE OF THE OTHER REASEARCHERS? IF I MADE SENSE TO YOU PLEASE HELP ME FIGURE THIS OUT I TOTALLY FORGOT UNTIL I SAW THIS POST SO THANK YOU BTW WELL CARE IS AN AWESOME COMPANY AND THEY EVEN TREAT THERE EMPLOYEES WELL AND I AM ON THE DIVIDEND PLAN TELL THEM CYNDEE SENT YOU LOL
Justiina,
Do you have a link to this (bill before parliament etc)?
I cannot imagine that would be possible, because normally patients need to consent to giving any outsider access to their medical records...
Does anyone else get a sweet taste in their mouth when they are possibly overmedicated?
Is there a source of "Official" confirmation that patients on T3 are expected to have suppressed TSH?
If you self medicate - have you asked for the thyroid medication to be noted down in your medical records?
Humph!! That didn't work!! Tried to lower antibodies naturally....a year later they are up ten fold :(
Question about blood tests, medical records, how to approach a 'missing' test and how to knock some heads together
