PeerMedical

[KM_NRP]

Good morning everyone!

I just came across (thank you facebook for all  your "suggested" sites  ) for a site called

PeerMedical.com   I looked briefly but its a site for "anonymously" sharing medical records for the data purposes of treatments and gage how things are working.  I'll call it an unofficial study. Anyone have any insight on this page and the good or bad?

TYIA

~Kris

[LexieCat]

I saw that recently, too. I'm always a bit leery of uploading personal medical info to a site I'm not familiar with (though I've uploaded my DNA to a few ancestry websites).

I'd be interested to hear about opinions regarding its security and credibility.

[Judy M2]

I am participating in the PEER/LUNGevity patient study. I don't know if this is the same as PEER Medical. My stepson looked at the study's security and thought it was fine. I did not have to share medical records. You log in every day, report your weight and then once a month answer questions about how you've been feeling, whether your finances have been affected by treatment and things like that. In exchange you get an Amazon gift card based on points you accumulate. I haven't found it to be intrusive. 

[LexieCat]

No, this is entirely different. It's a startup created by an entrepreneur whose father had lung cancer. There are medical professionals involved, but not sure how much.  

Personally, I'm staying away until/unless it gets some serious medical endorsements.

https://techcrunch.com/2020/09/02/peer-medical-allows-lung-cancer-patients-to-anonymously-share-treatments-with-each-other/

 

[KM_NRP]

@LexieCat

Thank you so much for that opinion Lexie! One thing that's been HIGHLY important and meaningful to me is the honesty with real life stories of people here on this site.  So much of the rest of info out there is doom and gloom.  Probably due to being such outdated information by the time it's released to the public or used in studies. 

[LouT]

I'm with Lexie.  Our medical records are the most personal data that we have and I'm already always nervous by how many patient portal sites my stuff sits on (my different doctors are with different medical groups, ergo, different portals).  So, while I admire him starting something based on his father I have no way of knowing if it is valid or what legal responsibilities he has regarding our data once it is given to him.  And anonymous may not always be anonymous as you put together more than one piece of information.

Anyway, that's my view.  It's a "No-Go" for me.

Lou

[Jennedy]

My husband just sent me a link to that yesterday. I told him about this discussion. 

[Tom Galli]

Kris & other members,

The internet is not your friend. Data shared is information that can be used for nefarious purposes. At LUNGevity, we don't ask that anyone share medical or treatment data. We allow folks to share without using a name, or exposing an email or phone number.

Be careful out there.

Stay the course.

Tom

[KM_NRP]

I did see where Erin Brochovich who is listed as one of the "main people" on the website if also the executive producer of a new TV Show, REBEL.  This leads me to question how much she is really involved beyond using her name.  Great discussion from the group.  I appreciate the points of view. 

 

@Tom Galli Well said..."The internet is not your friend".  I am more than thankful for this site and the information and people associated with it.  I  do stay away from all the other....CRAP.....out there.  

[Jesse L.]

I really don't mind putting anything out there concerning my medical AS LONG AS that same information cannot be directly linked to a face, a name, an address, a telephone number, or anything for that matter that will delineate me from anyone else. It is as Tom stated, the internet is not your friend. Furthermore, I can't in my heart believe after only being on this website a short time that it is for any other purpose but to be a personal informational and support portal for individuals needing help with the very human side of lung cancer.

I may just be throwing my 2 cents in but commercial and information gathering purposes are not what I think and believe we are here for... Therefore I will not give ANY of my information to anyone for those purposes. 

I have read as much on here too that nearly all of us believe there is so much more to cancer than statistics and studies. For what it's worth even if just one informative or cheerful thing that I put out there helps someone else, then I made a positive difference in that person's life. That's  what I'm here for...