I did not know that the HealthUnlocked platform was purchased by a pharmaceutical marketing firm. This post was on the HealthUnlocked blog
Jul 19, 2022, 10:40 AM (23 hours ago)
MartsmumMarionP 4 hours ago
If you go to the bottom of the page and follow the link to 'about us' you land on the explanation that a company called CorEvitas is behind all of the Health Unlocked communities and you can follow a link to corevitas.com/. Their website indicates that they are a data collection company supporting the bio pharmaceutical industry
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Magnus1964
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I now agree. I looked at UsToo Inspire and see it is Zero UsToo Inspire which means that Zero has taken over UsToo. Very limited topic selection. I will stink with Health Unlocked for now.
Yikes!!! I think then that we should have the option to have our information removed. [IMHO] I was under the assumption that the information shared here was confidential. 🤔 I guess the question is, where can we reunite to share and learn should folks decide to leave? Thanks for the heads up.
I just glanced through their privacy policy, looks like any shared data is aggregate, not personally identifiable, so that's good. I'm so relieved as I find this forum so very valuable!!!
That is exactly what is on my mind right now. Perhaps UsToo or it's board which is called I believe inquire I'll just have to check on that and get back to you.
As much as that news us unfavorable remeber that Healthunlocked is not running this forum it is only the host. This is a Malecare forum. Perhaps Darryl can clarify how its host effects data collection on his forum. He does stress staying anonymous.
I have mixed feelings about this. Does this alter our conversations? Would CorEvitas censor our posts? Are there paid members present that would try to alter the tone or intent of our posts, etc.
On the other hand it is a steady stream of support for all HU communities. Is there a health benefit to general population by providing good information to the bio tech industry?
I feel as long they do not interfere with the communities it's not all bad. However, the bio pharmaceutical is CorEvitas' bread and butter. I hope the forum is not destroyed.
All good relevant points. Clearly we will each need to decide for ourselves, but this business model is fairly standard for all internet use of any real value. For the model to exist it needs to be profitable. The member beliefs will range from malicious to necessary and possibly beneficial. Good for use to be aware in either case. Thanks for the post.
It is not just standard of care that is covered in this forum, but supplements, experiences, and so much more. As long as CoreVitas does not interfere with our conversations and try to control the narrative, I'm ok with it.
Only To a limited point . Some discuss alt med . But I’ve noticed that it does not go far . Mostly the heads poo poo nutrients and even diet . I’m not talking about you or me . I’m alt med and nutrients all of the way . Good day ! ✌️🕊🕊🕊
I know what you mean and maybe I have not been as encouraging as I should when that happens. I will try to do better in the future. You too can be a voice in the wilderness.
Thanks brother, I have kicked the hornets nest. I have witnessed social media platforms crash and burn. I don't want it to happen to here. I fear this is not over yet.
There are no paid members. I and our Malecare community team Beth and Arnold “examine” new members to keep out the trolls, spammers, and sneaky journalists etc. As you see, our team does a brilliant job.
As to your other point, everything you type online can be viewed by the nefarious. Don’t type what you don’t want people to know, anywhere. That said, you can see there are no ads driven by what you type here, unlike the Ustoo zero community and others.
Were waiting......daryl?.....ta......chime in....have we been led down the sewer....we allready have a fkn death sentence....are you grave robbers....like chinese organ harvestors....cant wait for kaliber and others to have a say ....needless to say im disa lusioned....but with the state of world and our country wouldnt be suprused if bill gates is a owber of said company.....guess its time to sign off.....good bye cruell world..🖕
Thanks..magnus....i know youve been on here lot longer than i...and i guess im bieng harsh but it just sux that you get comfortable sharing thoughts,feelings, some not even related to our disease...and you drop your gaurd...now you have to wonder who's a bot....and thats a valid question..ill probably hang around ...but with alot of trepidation...hell ive allready given the trials company my fn dna....im no longer under the radar.....but will always flt my freak flag.....but franklin was right ...you give up liberty for security.....your no longer free.....or sumin like that🇺🇦🇮🇪
I think the phrase you looking for is "those who give up their liberty for security deserve neither."
As I have said, as long as CoreVitas does not try to control the narrative I am ok with. It kind of makes me feel like I'm in a petri dish. Maybe I should drop my pants and show them my butt.
Ill second that.....i quit going to a support group in person because it was always some doc pushing the latest do wah ditty...Hu has BEEN great ....but as someone else said.....there " aint no free lunch"......thanks magnus for being a constant voice of reason....now that johnny boy has left the building ....we'll be counting on you....youre are elder warrior
So they say....just like the hipa ( sp? ) form at doc....i just feel blindsided...this place has been a savior for me...felt like biting a bullet several times but the empathy i felt he i thought was genuine....but just like that cheap whore who told you you were the best ever .....ill have my doubts....were no good to em dead......
"– Nationwide disease registry Corrona has acquired virtual patient community HealthUnlocked, creating a first-in-class patient experience ecosystem.
– The acquisition will enable Corrona to expand its broad set of capabilities–ranging from highly granular and longitudinal structured data across eight registries."
And
“By combining with HealthUnlocked, we are expanding our broad set of capabilities–ranging from highly granular and longitudinal structured data across our eight registries, to broader patient insights from HealthUnlocked,” said Abbe Steel, Chief Patient Officer of Corrona. She continued, “The HealthUnlocked communities provide access to engaged patients across the globe, allowing us to better understand the patient experience and what matters most to patients. Our organization is positioned to expand its expertise in gathering, analyzing, and applying deep patient insights to optimize the patient journey and bring significant value to our clients.”
They aren't hiding what they're going to do - which is mine the forum for information to sell. "highly granular" information.
I’ve never been under the impression otherwise. If this is a new ownership, then this isn’t the only time as it has happened before. I think it sold for around a million dollars last time a while back to another pharma research group. Darry can correct me on this if necessary. I expect researchers to harvest group information , this is after all, a commercial enterprise that sells off access to research groups, pharma companies and others interested. It’d be a rich field of data collection for drug side effects, mental side effects , trends of treatment, perceptions of drug effectiveness and so much more. There would be “ seed “ posts by researchers looking for info on particular subjects , replies by associated individuals to “ stimulate “ conversation … and so much more I can’t think of it all. You should also expect that some individuals prominent on the group receive at least a stipend or even a salary.
Frankly it’s the “ web “ …. Same as it ever was. I can’t count the times I’ve mentioned something , only on this group, …and it has caused numerous “ pop up ads “ or full sheet commercial ads to show on my Google pages. Sometimes nearly everything on my Google feed is gleaned from my cookies and posts I make here ( mostly the only place I post ) .
It’s nothing unless people get on here trying to change up things or you start to see Darryl intervening / setting new rules … more often. Wake up brothers , come out of your cocoon and see the sunlight …. the real world. Changes have been made that I’m aware of personally ( that related to me ) . If there is a buck to be made then industrious people will go after it.
So far …. It’s the same as it ever was ….. no different from any of the other 10s of 1000s of other groups on the web, Facebook, Reddit … everywhere. Just ignore it and see if they meddle in group actions or activity. No biggie … forgettaboutit
❤️❤️❤️
( hey , maybe I work for “ them “ …. You’d never know for the most part. who preaches the party line the most ? Just say’in yayahahahaya. )
36.63 miles this morning 2:05am. Neat STRAVA. 101.08 miles was 7/10 Sunday's 72nd Birthday ride, disappointed a bit because of how slow but HAPPY that it was done. Next Tuesday is Pete's 100 mile Memorial Ride. 97F right now and thinking you're more comfortable
Sorry I know I saw the ride but didn't remember the mileage. I was thinking of Pete's ride. Will your T be good until then? 97 is brrruuutal! Mid 70s here but may hit the 80s soon. Headed up a mtn yesterday and at the slow speed I was moving I became a moveable feast for the flies and mosquitos. I was hoping I missed them, as soon they will be gone, but not yet. Will you do the same route next week you did 7/10? At least you'll be able to compare speed at a glance.
I feel for you on that undetectable T. Thats a very cool memorial. I haven't used bug spray on a ride for many years. Last time I remember using it I burned holes in my lycra. Lesson learned :0). I'll be rooting for you.
It’s a long story but there were a lot of lessons learned in the IRC flame wars that broke out back in the day. Most guys here prolly never heard of IRC or the flame wars but lots bad about humanity and probably the very foundation of data snatching were exposed and about 99% of what you see today as bad or undesirable web behavior. Unless you were an 3litE Haxor you probably never heard of it. The point being that nothing being seen today is a surprise … actually the web has tamed down since then….. and almost nothing is what it seems to be yayahahahaya yayahahahaya. Same as it ever was buddy. And , that’s kewl … just the web being itself.
Yea , that’s good Counsel …. I forget the lessons half the time ( more than that ) and seem to repeat those mistakes sometimes . More as I get older seems like. Yayahahahaya. Better up my Geritol intake . 😂😂😂😂
Oh I remember well (Internet Really Chat) groups, lolz. I remember 1200baud and those terribly crazy days! But it still happens, you're right, the place and names have changed, but the anonymous nature of the internet brings out some of the best, and worst in folks!
I was on a Firearm Forum that went through the same stuff! Serious flame war and then the site owner sold out, to a infamous Anti-Gun group from Canada! Well, whatever would they want with all that data? Lol... The one side of the war stepped aside and created their own new forum that's still running today and is very active.
I’d be embarrassed to admit how many spiders, bots and alter I. d’s I ran on IRC in its heyday. The big fight to get control of the channel for 24 hours before the next midnight reboot happened. I’ve had foe’s band together and launch massive counter attacks ( against my own massive coalition ) it got so violent and intense it imploded. IRC lost 60% of its members that went off to the www back in the early 2000s. It was so repulsive. It never recovered its glory. Still it’s huge and still fun. Anything you want is still available if you look enough ( music, books, software, etc. ) At one time IRC was massively larger than the Humans definitely have a “ dark side “ yayahahahaya
Thanks for posting Magnus. I decided to make our profile more confidential and removed my husband's name and the state we live in. This is very disappointing.
Don’t be disappointed, the web is universally the same everywhere. Yes keeping your actual information private is a wise choice … “ everywhere “ on the web.
This group remains an invaluable source of information and companionship for death sentence men and their shell shocked loved ones. Its value in that respect is beyond measure. we all need each other … boy howdy. Hopefully the group will remain the same as it ever was. We need caregivers like you on the group.
Yes Kaliber, this group is invaluable to many of us. Hopefully, it will stay the same. I only wish I had been aware of it when we were trying to find a doctor and then decide between RP and radiation.
Please don’t think I am berating you, but you should remove your real name, address etc from all websites, not just here. And don’t write your personal information on any new sites. Imagine this, there are 16,000 people here but over a billion on Facebook Twitter, and lots of medical and hospital sites. DesertDaisy is a fine nom de plume
Nothing has changed. Malecare’s agreement with Healthunlocked remains the same as when we first started working with them aprox 7 years ago. Privacy, data, etc remains in your hands. Anonymous aggregate data is just that, totally anonymous. Even Malecare can’t get at the specifics without your permission, though we do see the aggregate data, which is innocuous. I am on vacation. I can respond to specific questions in early August. Hold your questions if any until then. Meanwhile, watch this: Malecare and HealthUnlocked - The World's Largest Online Prostate Cancer Support Communityyoutu.be/UcfEd2K6Sl8
Hey smurtaw.....ive seen movie the wackness.....nice cover.......wink wink...
I salute you always Magnus1964 as the guy that kept rolling for decades ! You inspire me.. Big Pharma? No surprise there just another reason for me to drop off of this forum . Good luck to you Sir! Salud! 💪
Thats another punch in the gut, but people are what makes up this site. Now we have to read the clouds like weather. I’m hanging in. Good, smart people here. Hopefully no blocking of good stories. Mike
Well I hope they won't make us wade through ads to get here.
Darryl, please, still would like to know, if this was announced our just recognized my Magnus by coincidence. This is for me if manor importance regarding trust.
Just watched. 🙏 In today‘s world this video doesn’t really say too much. Nobody would officially announce misuse of data. But anyhow, you announced this on time and for the time being it’s ok. I‘m sure all of us will watch carefully. Enjoy your vacation, just learned that you are on holidays. Sorry for interruption.
Looks like it happened almost 2yrs ago...wouldve been nice for heads up!...thats 2yrs of data harvesting....just sayin....its the " real " people that make this group....but i feel like i woke up in bed with a blow up doll instead of me spouse....ill quit beating this horse but nothing worse than a bit of betrayal...although like kal and others who are more tech savvy ...was to be expected....me im still trying to figure out the abucus.....
Well if I were a marketing person for a pharmaceutical company, I would have been on the forum for a long time. Or a caring doctor, PA, etc. The info shared here is not useful unless some medical providers are on board. They might actually learn something. Also it’s helps everyone if providers know the real impact on men and their families. I guess my concern would be if someone pretended like to have a supposed miracle cure just to sell the product. Thanks Magnus for pointing this out!! My sweetie Thad will really want to hear about it!!! And all of his wonderfully amazing doctors!!! And drug companies!!!! 😉
Whether recently purchased or purchased in the past. Whether ads are allowed or not. What would be the purpose of a pharmaceutical company purchasing /owning a site such as this? This is no criticism of the wonderful moderation/heartfelt responses from all the posters. Just wondering why they want/wanted this site?
CorEvitas is a pharmaceutical marketing firm. They research marking data for the industry. This site provides information on personal experiences and other information useful to the industry. I have no problems with that. So long as there is no attempt censor or control the content of forum.
I shadowed here and a few other sites without jumping in the pool for quite some time! Only once I read and seen enough and got a good feeling about it did I then join!
Data collection, dissemination and the sale of, is and has been a huge business for some time here in the US. Nothing is new... As long as things stay apparent and upfront, things are ok. Post nothing you don't want memorialized as the Internet, even deleted sites, have ghosts that just don't seem to die, lol. That rule applies regardless of what medium or social site you may use. Some of these kids today are learning the hard way when they go for jobs, etc. The internet has made the world such a small place!
I'll keep hovering at 30,000ft looking for a soft landing!
Yeaaaal brother … I may have been one of your best customers yayahahahaya. I forget how many but I’ve heard there are 100 million undernet servers in current operation. ( maybe servers in total , dunno ) That’s a bunch of people doing fun stuff yayahahahaya yayahahahaya I loved it. It took me forever to figure out what was going on in those rooms with names kinda like “ Bhang “ and other filipino and Asian servers …. Yayahahahaya yayahahahaya. Showing my / our age now
haXor, krackula , a_alpha one , archangel , and many more . My name on redit is #originalKrackua yayahahahaya
We've had a nice run of replies. Malecare, founded in 1999, but actually begun by me in 1997, is one of the pioneers of health related remote/online support, as well as an in-person support group network. We've learned a lot since day one, right up to this moment. We will always work harder to be better. That creed makes our work fun and gratifying. We know we are helping people live longer and happier lives, and for that, each of us is honored. For now, replies are turned off. Further conversation about community management can be had with me via direct message (click on my avatar).
This is a prostate cancer support community. Let's us focus on helping ourselves, our brothers and our sisters. Replies for this post are now turned off.
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