Clinical Trials Doctors Demand Ownership Of Patients' Data

[Kyla]

http://www.forbes.com/sites/stevens...mand-ownership-of-patients-data/#881c2ad297a0


excerpt:

...But they seem to have forgotten THE motivation for clinical trials: curing disease. In a staggering omission, Devereaux and his colleagues don’t even mention the words “disease” or “illness” in their article, not even once. Instead they focus on “risks” of sharing data, by which they mean the risk that someone else will make a discovery that they didn’t think of, versus the “benefits,” which in their world means either confirming the original study or possibly testing a new hypothesis. They seem oblivious to the notion that re-analyzing the data to contradict the original claims might actually be a benefit to the rest of the world.

Appalling. Did they feel this way when they first went into medical research? Probably not, but somewhere in the competitive struggle to succeed as researchers, they lost their way...

 

[JohnCB]

http://www.forbes.com/sites/stevens...mand-ownership-of-patients-data/#881c2ad297a0

Sadly I can't read this as I have an ad-blocker. Apart from not wanting to be overloaded with adverts, I also do this as a security feature. The way internet adverising is organised, third parties can inject malware via ads that are not vetted by the website owner and are not controlled before being displayed on reputable websites.

 

[Kyla]

Sadly I can't read this as I have an ad-blocker. Apart from not wanting to be overloaded with adverts, I also do this as a security feature. The way internet adverising is organised, third parties can inject malware via ads that are not vetted by the website owner and are not controlled before being displayed on reputable websites.

I have an ad blocker as well, I just turned it off for that one individual page.
If it is "Adblock", you just click on the icon and it brings you to a drop down, select "don't run on this page"

It's annoying but a lot of sites are doing this now due to losing ad revenue.

 

[frog_in_the_fog]

I think the benefits of sharing data far outweigh the risks in my opinion.

I don't block ads on forbes either. If you are worried about security view the site in incognito mode.

 

[user9876]

Those running trials forget why people agree to take part. They want cures they are not taking part to help academics careers. But the academics forget that and talk of data parasites.

 

[JohnCB]

I have an ad blocker as well, I just turned it off for that one individual page.
If it is "Adblock", you just click on the icon and it brings you to a drop down, select "don't run on this page"

Yes. I have done this in the past, but as I become more aware of how the internet ad feeds can be interfered with and subverted I also become more reluctant to let down my defences. This latter point isn't because I am unwilling to see the advert, it is because I am unwilling to drop my guard against malware, just as I am not prepared to turn off my anti-virus or firewall.

It is very easy to turn off Adblock Plus but that does not make it a good idea. The website is asking me to turn off ABP but they are not offering any guarantee that their advertising feed is free of malware. They probably can't, as there are many layers in the ad business, and criminals are becoming more adept at subverting the process.

Thank you for providing the link, and I am interested in the content. I don't hold you in any way responsible for the policy of the website. I am just commenting that it is not available to myself and others who are avoiding a known risk factor. As I become more ill over time, I feel much more risk averse as I can no longer afford the effort to clear a malware infection if I can avoid the infection in the first place.

 

[undiagnosed]

From the article:

It gets worse. Devereaux and his consortium go on to lay out what they might be willing to consider:

• Exclusive use of the data for a minimum of 2 years after the first publication
• Another 6 months of exclusivity for every year the trial lasted, up to 5 years of exclusivity
• Anyone who wants the data should pay the original investigators “for their efforts and investments in the trial.”

What a surprise, they want government granted monopoly so that they can extract maximum benefit, to the detriment of others. We know how well this is working with the patent system, particularly drug patents. Same old shit.

 

[Invisible Woman]

The snag is most desperate patients will not realize the implications of non-data sharing. What we have been through with PACE would seem unbelievable to them (frankly, at times it seems pretty unbelievably to me).

Knowing what I now know, I would be very, very careful about signing up for any trials.

I think patient organizations might be the place for this type of education. Otherwise it's potentially lambs to the slaughter all over again.

 

[user9876]

Yes. I have done this in the past, but as I become more aware of how the internet ad feeds can be interfered with and subverted I also become more reluctant to let down my defences. This latter point isn't because I am unwilling to see the advert, it is because I am unwilling to drop my guard against malware, just as I am not prepared to turn off my anti-virus or firewall.

It is very easy to turn off Adblock Plus but that does not make it a good idea. The website is asking me to turn off ABP but they are not offering any guarantee that their advertising feed is free of malware. They probably can't, as there are many layers in the ad business, and criminals are becoming more adept at subverting the process.

Thank you for providing the link, and I am interested in the content. I don't hold you in any way responsible for the policy of the website. I am just commenting that it is not available to myself and others who are avoiding a known risk factor. As I become more ill over time, I feel much more risk averse as I can no longer afford the effort to clear a malware infection if I can avoid the infection in the first place.

I have a small linux netbook that I use for browsing websites that I think may be dodgy. I then regularly reimage it from a usb key.

The other way to browse if you are concerned is to use either virtual box or VMWare player to create a virtual machine and then copy it. Use the copy to browse and regularly delete it and refresh from the original. If you create something like a Ubuntu linux vm then I think that is pretty safe. If you create a windows one downloading wireshark and sysinternal tools (from microsoft) can help - a lot of malware looks around and doesn't install if it thinks it is in a VM or wireshark or other tools are installed. Basically malware writers are trying to avoid detection. Perhaps the unfortunate thing is ransomware doesn't care.

I've used virtual machines to purposely get infected by malware (to watch what happens!) and I've not seen anything breaking out but there could be occasional issues with the protection. But the memory protection is handled at the chip level so its pretty good.

 

[JohnCB]

I have a small linux netbook that I use for browsing websites that I think may be dodgy.

It's not a question of dodgy websites. It's a question of dodgy advertising. Or perhaps all websites with ads are dodgy websites and you don't know if they have advertising until you load them.

Individual websites don't have the control of upstream activities in the chain and it is a longer chain than most people would expect. It is a longer chain than I had expected. A reputable website can carry an advert designed to inject malware. On reloading it may well carry an entirely different ad. It's the advertising that has the mechanism to infect your PC, not the other content of the site.

The other way to browse if you are concerned is to use either virtual box or VMWare player to create a virtual machine and then copy it. Use the copy to browse and regularly delete it and refresh from the original. If you create something like a Ubuntu linux vm then I think that is pretty safe. If you create a windows one downloading wireshark and sysinternal tools (from microsoft) can help - a lot of malware looks around and doesn't install if it thinks it is in a VM or wireshark or other tools are installed. Basically malware writers are trying to avoid detection. Perhaps the unfortunate thing is ransomware doesn't care.

I simply don't have the capacity to go through these activities. I do understand these mechanisms. I do also understand the amount of activity required to perform them. I have other things of a higher priority which are overdue. Although I originally installed ABP to reduce the load of the advertising on me, since becoming aware that it is a serious malware mechanism, the latter is also an important factor. I struggle to run my backups routinely. Or more precisely, I fail to run my backups routinely.

As I become more ill over time, I feel much more risk averse as I can no longer afford the effort to clear a malware infection if I can avoid the infection in the first place.

I'm really not in a position to take on the additional workload you suggest.

 

[lansbergen]

The patients give the information. If anyone can own it would that not be the patient?

 

[frog_in_the_fog]

Currently when you agree to be a Stanford test subject, you are agreeing to Stanford keeping your data for 100 years.