[timnash]

PHPerspectives Bristol-Myers Squibb forum?

by timnash on Tue Jul 14, 2015 8:32 am

Hi All,

I was diagnosed with multiple myeloma on May 20, 2015 and have since undergone 6 treat­ments of Velcade / Cytoxan / dex, and am responding favorable to the treatment. Will begin stem cell transplant in 2 months.

I filled out a survey online about multiple myeloma and was contacted by PHPerspectives. They state to be a liaison between corporations and patients under the guise of patient advocacy. This particular company is Bristol-Myers Squibb.

I am being invited to take part in a paid expense trip to participate in a forum on multiple myeloma.

In order to participate I need to sign a release that will give them access to me and my records, etc, Does anyone know of these type of offers? Is this legitimate? Are they just farming for data?

I like the Idea of sharing my story to help others and want to participate, but I am a little cautious about this.

Any experience or thoughts on this wold be appreciated.

Thank you all for the very informative posts that have help me over the last two months under­stand and learn to live with this tough disease.

Tim Nash

[NStewart]

Re: PHPerspectives Bristol-Myers Squibb forum?

by NStewart on Tue Jul 14, 2015 3:01 pm

Tim -

There are lots of these offers available to us as people with myeloma. I've participated in a couple of them without knowing who the company was that was doing the interview (a marketing research firm did the interview anonymously), but figured it out from the type of questions that were being asked about an immune-targeted drug. I haven't heard of one that asks for access to your medical records. Hopefully someone else on the forum will be able to answer your question about medical records.

Of course, it is always up to you who you allow access to your medical records. Sometimes all the pay in the world isn't worth it. But, this instance might be one that is.

Nancy in Phila