Interested In Becoming An AFib Patient Advocate?

Nov 20
AFib News Blog
Interested In Becoming An AFib Patient Advocate?

Posted by jseitz on November 20,  2017  11:21am EST

The International Consortium for Health Outcomes Measurement (ICHOM) is recruiting patient advocates for its Standard Set for Atrial Fibrillation Working Group. These patient advocates will help develop outcome measures that matter to patients with AFib. Please see the attached flyer for more details about this opportunity and contact information. 

 
  • Mercurius
    Mercurius,
    Hi,Might be I'm interested in. I have silent (asymptomatic) afib since 3y. I'm MD and PhD.Potential conflict of interest. My job actually is participation in a cheap miniholter ECG development. That's why may afib has been found. My Afib has been found by chance during the in house testing. Best regards:Mercurius
  • jseitz
    jseitz,
    Hi Mercurius‍,Interesting story! I'm not sure whether the ICHOM would consider your position a conflict of interest or not, so I suggest that you contact them using the information on the flyer and explain. I'm sure they would appreciate your response!Regards,Jonelle (Community Admin member)
  • Patio
    Patio,
    I am interested. I was diagnosed in October with a flutter which soon became afib as well. I am one of four siblings all diagnosed with afib and an another younger sister died suddenly in March of a stroke likely caused by undiagnosed afib. I am retired with a masters degree and doctorate in non medical fields.
  • purpleeagle76
    purpleeagle76,
    Hi. I am a retired RN recently dx with A Fib. I would be interested in becoming an advocate?  Janet jam618143@yahoo.com
  • evalovic
    evalovic,
    I am interested though not sure I have enough information to know what is expected for me other than training sessions.  Also I am not sure if I have already missed the January 2018 session.  I have been diagnosed with AFIB
  • jseitz
    jseitz,
    Hi Patio‍, purpleeagle76‍, and evalovic‍,If you're interested in participating, use the contact information in the flyer to inquire. Best of luck!Regards,Jonelle (Community Admin member)
  • evalovic
    evalovic,
    I know that yesterday I volunteered to be a patient advocate, but I want to say that the idea of helping to provide information about what actually matters most to those of us who live with AFIb sounds increasingly as something inportant to do.  I hope I have not missed the deadline.Thank youElaine Valovic
  • evalovic
    evalovic,
    Hi Jonelle,Sorry it is not clear to me what contact information you have in mind.  The link to a Dr Gupta is not working and the link to the pamphlet has no clear way to volunteer.  Perhaps you could send us the linl you mean for us to use.  Thank youElaine Valovic
  • jseitz
    jseitz,
    Hi evalovic‍,Thanks for getting in touch. Just to confirm, you tried emailing the contact below?Zofia Das-Gupta, ICHOM Project leaderz.dasgupta@ichom.org If the email to z.dasgupta@ichom.org bounced back to you, please confirm and I'll reach out to the rest of the team for advice. Thanks!Jonelle (Community Admin member)
  • evalovic
    evalovic,
    Hi Jonelle,The link in the letter of explanation appears to be a dead link in that clicking does nothing and it cannot be copied and pasted.The link as you provided it allowed me to copy and paste which brought me to the ICHOM web site.  But I see nothing there aboutthe AFIB standards project.Your assistance and prompt response are appreciatedElaine Valovic
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