Cancer Experience Registry

kira66715 · March 2014

Heard about this from a Mass General oncologist--it's about how patients experience cancer and it's treatment. I shared the information with a breast surgeon who is very impressed. I did the survey and they asked the questions I wanted to talk about:

https://csc.cancerexperienceregistry.org/

Anonymous · March 2014

Kira, looks like a great site. However it think its a great shame (even a red flag) when a prerequisite to disclosure of their terms and conditions is registering first. Most sites have their terms and conditions and privacy policies fully viewable to whoever wants to look. This is what I got when I clicked on those links,

Quote

By clicking Join Now! you will have the opportunity to: ......

2. Access the Registry’s guidelines for participation, including the terms and conditions and privacy policy.

Unquote

kira66715 · March 2014

Musical, I'm so naive. I don't think it's evil, it's a non-profit, but lots of pharma sponsors. I just saw LBBC was a sponsor. It appears to be run by a group of psychologists

http://www.cancersupportcommunity.org/MainMenu/ResearchTraining/About-the-Institute/Contact.html

I saw no bias in the questionarre, and their programs look good, but still.

Then again, Rockson's LE registry is totally biased toward bioimpedance, and it's based at Stanford and they ask you to sign releases of medical information...

Hard to figure out who is totally trustworthy.

Anonymous · March 2014

Kira if you are naive well where LE is concerned I think not! Your posts are valued. Just to clarify, my comment was more along the lines...the site would do better to disclose these facts up front should visitors want to look FIRST before registering, rather than seeing something they might want to back out of, AFTER the websites got your details. To some, this probably doesn't matter but to others like me, it certainly does.

I like to see what I'm getting into before I commit. Theres nothing that builds trust like facts. When those are hidden indeed its hard to know where someone is coming from. Sometimes this matters more than other times. With our health details I think it really matters.

kira66715 · March 2014

Musical, when we created stepupspeakout, our goal was to get HON certified--Health On the Net--and transparency is necessary, and we got the HON certification and maintain it.

http://www.hon.ch/HONcode/Patients/

I did do the questionairre, and found it interesting to review their data, but even when I'm logged in, I can't see the privacy policy, but did read more under FAQ's.

Checked the privacy policy of this site--impressive--

http://www.breastcancer.org/about_us/bco_commitment

Still, I can know facts about LE, but be naive...

Anonymous · March 2014

Im sure we're all naive about something. Me? Medical Research and I would love to do this seriously but 1/ there's only 24hrs in a day and 2/ that's why we have people like Kira .

Thanks for the link to HON.... just reading that page, what they say states the problem well....

QUOTE The problem is therefore no
longer finding information but assessing the credibility of the
publisher as well as the relevance and accuracy of a document retrieved
from the Net. UNQUOTE

Exactly. Its a minefield of possibilities, anywhere from outright lies to the truthful facts with plenty of mixture in between.

And to add to the mix... the very institutions we should be relying on are not full proof against corruption, like being bought off to skew results. This happens! It would be very naive to disregard this.

Most haven't got the time or the inclination to go down the deep rabbit hole concerning privacy and security on the net. Unless one does some VERY serious spadework, sadly its all too easy to be accepting of words that sound good but in reality fall short of staying ahead of the nasty side of the internet. Hackers and crackers are no respecters of those with good intentions.

Thats why, long ago I mentioned to BCO about getting up and running with https (meaning, the site is encrypted). Was just a couple of days ago I was delighted to notice it instantiated, but theres teething problems with the update which has broken a number of things.

These days as the cat and mouse game continues, even https is vulnerable and thats scary because thats what the banks use. Even strong encryption can be broken but at least its a move in the right direction.

but even when I'm logged in, I can't see the privacy policy,

If you can't see it then thats sloppy. ThumbsDown Theyve gone back on point #2. Not a good way to gain trust.

kira66715 · March 2014

Musical: I ran it through HON, and it is an NIH sponsored clinical trial--now why can't they make that CLEAR??? It adds so much legitimacy to it.

http://clinicaltrials.gov/show/NCT01295658

I sent an email to the PIs to tell them that their site is driving away the people who they would like to enroll due to it's lack of transparency and privacy.

Binney4 · March 2014

Kira, brava! I just love the way you go after things!

Thank you,
Binney

lekker · March 2014

When I clicked the link a few minutes ago, I saw the terms and privacy policy links at the bottom of the opening page (scroll all the way down). I didn't have to register and was able to click and read both the terms and privacy policy. Am I missing something?

kira66715 · March 2014

Lekker, they changed it!! I wonder if the emails made a difference or if they read it on these boards.

I sent all the information to a researcher and asked her to figure out the details about this group: they seem to have a legitimate mission, and are doing this via an NIH grant. They are sponsored by drug companies, but also partner with legitimate advocacy groups.

I actually did the questionarre and then I was able to go in and look at data from other people and found it kind of reassuring, how many people had similar issues and how few were asked important questions about their quality of life by their treatment team.

Hopefully they're using this data to improve the care we get.

Kira

lekker · March 2014

That's great that they responded to the feedback. Kira, it sounds like you think it's worth our time - right?

Anonymous · March 2014

Kira great work. You need a medal! I'd send you a cyber one from my HDD but the uploading- piks - from - HDD is broken for me when I tried yesterday. Be interesting if /how they respond.

Anonymous · March 2014

OK theyve responded and listened. Thumbs up.

kira66715 · March 2014

Personally, I read about it from a trusted source, and showed it to a breast surgeon who was enthusiastic, so I went and signed up--totally ignorant of privacy policy and who was sponsoring it--and unloaded a ton of my PTSD onto the survey. They do ask about your concerns and the impact of your care and information you received, or didn't receive. So, I vented away.

Then I posted it here, and Musical astutely noted that I was venting freely to the unknown. Some personal stuff, no less.

But, after searching and figuring out that they seem like a legitimate group and this registry is NIH funded, I felt better about it. And FYI, the profile doesn't need to have identifying details such as address, birth date, phone number.

So I went back and played with the survey and I could look at a question and see how others answered it, and I found that interesting.

I think it's probably an okay project to participate in, and it was cathartic for me, and if it helps inform the oncology world where they're missing the boat on patients' experiences, then they'll have helped a lot of people.

Anonymous · March 2014

Yes unfortunately what goes on under the bonnet of the makings of a good website is staggering. People who have great intentions can often overlook things and as such, its good to give them the benefit of the doubt. If theyre legit, then they will only be too pleased to change things and it looks like the case here.

kira66715 · March 2014

Well, Musical, it looks like your concerns are very valid: I had a researcher check out the site in depth and this is what she said:

I had seen that cancersupport page before and was very skeptical of who was funding it. The fact that is NOT transparent is very problematic. And when you drill down, it does say that they give “de-identified” information to pharma. So yes, it’s a data mine. Not a representative one. Not a good sample for research. So, it must be completely for marketing purposes.

So you feel misled because you were. It’s very shady.

And they finally wrote back to say that they are NOT NIH funded, but are listed in clinicaltrials.gov and various institutions can use them for research, and that they did change the privacy page issue due to my email.

So, sorry to mislead everyone. They asked the questions I wanted to answer, and they came well recommended.

Anonymous · March 2014

Well Kira its so easy to get taken in by sites. To mislead someone indicates intent so you didn't mislead us. You just made an innocent and common oversight that most people would typically do. Unless anyone using the net is prepped to do some hardcore spadework looking into security issues, this is bound to happen. As for knowing who is who in the field of research, I might not be so astute. LOL

I certainly can't keep up with the never ending shifting sands of a scammers tricks but theres a few things that throw up a red flag. One of the biggest is, if theyre not completely transparent, then beware. Stating their privacy policy, terms and conditions, "mission statements" and any other data that's likely to make you change your mind about joining them, should be up front BEFORE registering/joining. NOBODY likes finding out potential letdowns "after the fact".

kira66715 · March 2014

Musical, I wrote to the Harvard based oncologist, very well respected, who first recommended it, in an article. I sent her an email about my concerns, and ironically, I'm aware of her as I've used the "Schwartz curriculum"--

http://www.theschwartzcenter.org/

Which is for compassionate and ethical health care and she's affiliated with them. Hopefully, she was duped like I was, because this is a bit of an ethical violation here....

Anonymous · March 2014

Kira isn't it surprising what you might uncover when you start with the "non transparency" clue. I just got you started and you sure are one for ferreting out what should be happening in this field.

Even legit and well recommended people can innocently get taken in, but you still don't really know if they have many fingers in many pies or conflicting interests, unless you pin them down and point blank ask.

If this is important to you, you might follow that course. Other than evading the issue, either they will lie or tell the truth and contradictory statements have a way of revealing themselves sooner or later. At the end of the day if trust in a person is going to be paramount, then that has to be earned and that takes time.... sometimes that isn't expedient so we take our chances.

Cancer Experience Registry

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