Please tell me - would you share your records for research?

[Lulu54]

I am in PCORI meetings in Washington DC  listening to conversations about the ways we can get patients  to participate in research specific to our disease – in meaningful.  This involves the capture of large amounts of data, primarily through our sharing our electronic health records medical

This is not  just specific to the MS community but applies to all people in the US.  
I am part of a  patient powered research network team that will be looking at MS and we have been discussing this for a while, now.  As I listen and view their slides, it prompts me to ask you – what would it take to get you to give access to your medical records ?  

I am happy to give specific ideas and questions but want to leave this intentional broad so you might share your thoughts – what do you think?

[Guitar_grrrl]

I would. I echo Kyle's sentiments re: security.  Only for MS research.

[anon07072023]

I think that I would do it. It may take them quite a while to get thru all of mine. ;-)

[debgen]

Ouch
Deb

[karryon55]

I would have no problems with this as long as it was for a good cause & things were kept confidential.

Karry.

[ghost39]

No I really don't think I would be, if I am totally honest.

[debgen]

I would be interested in sharing my very long and complex medical records in the name of research. I would like to believe that something good can possibly come from my MeSsed up medical ride!

(Hugs)
Deb

[Lulu54]

Anyone else with thoughts on this subject?  I would love to hear them. Thanks.

[Lulu54]

and I just reread my question - sorry for all the brain lapses in writing, I was typing and also listening to the speaker and obviously not doing such a swell job! I am glad you seem to know what I was asking.........

[johnniebear]

If   you need a Limbolander ,  you can count me in.  My DX is RIS..


take care
JB

[Lulu54]

First let me say the timing was not so great - seeing the cherry blossoms in full bloom is on my bucket list, and they were at peak less than 24 hours before my arrival.  THEN a wicked storm of sustained winds and heavy rains took them down just hours before we landed in DC.  So seeing them in person remains on my bucket list.

I appreciate your thoughts- deidentified and depersonalized data would be captured, but as you point out, that is never 100% true.  IP addresses can immediately unlock infomration about a responder.  This concern is why having an organization you can trust leading this project is key to success.

Working on this project is one of the several reasons I have not been here as much lately and I do miss our interactions.

thanks for answering my question, Laura

[Joiedecour]

If you are ok with risk but being on here is probably risky too, no?

[doublevision1]

To further medical research...... yes, I would consent to sharing my medical records for this express purpose.

[SarahL2491]

I've always been told I am too old for any clinical trials, but as Kyle says, no electronically stored data is safe…..and you are in DC, where nothing seems safe (sorry, couldn't resist that)

I have mixed emotions about sharing my data, particularly in that I found being in the health field, that some information I shared with "high ups" that was to be strictly confidential and my name would never come up, well, you can fill in the blanks from there on…….

I guess I would bow out unless I were part of a trial, and that would be another whole ball game.

Have fun and enjoy the cherry blossoms, wonderful time of year to be in DC.

[Evalucia]

I would have No problem sharing my medical information.  

When I went for my LP I did donate some of my CSF for research, as long as it is for a good cause, then I would definitely share info.

[kwarendorf]

Understanding that NO electronically stored data is safe, if reasonable safeguards were in place, that would confine the data to medical research facilities, then yes. I would make my records available.

Kyle

[MMichelle34]

Couple of basic concerns, people can lose their job if their disability is exposed (illegal firing or not). Also people can be discriminated against in other ways.

That being said, a couple of my TMJD doctors have used my case information. They just left out all personal information and to me this was completely awesome. In my personal experience, some doctors need to see a patient's life to understand the different tolls and effects diseases can take.

[Corriel]

Hi there! That sounds like an awesome trip!

Personally, I would have no issues sharing my info with a credible agency/association.

I even tried to volunteer to go to an MS clinic a few hours away from me because I did not present typically and I thought since the clinic participated in research they wouldtake me on. Apparently, unless I am unhappy with my local neuro or others closer that is not an option.

Go figure. :-)

Corrie