[ Englisch] SparkCures: Connecting Myeloma Patients With Clinical Trials

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Topics include: Patient Stories

On location at the 2015 American Society of Hematoloy (ASH), medical correspondent, Carol Preston, interviews the creator of SparkCures, Brian McMahon.  SparkCures is one of Patient Power’s newer partners, offering our subscribers and viewers an easy-to-use HIPPA-compliant tool for accessing clinical trials.  Carol and Brian discuss the heart and soul behind the creation of SparkCures and where SparkCures is headed for 2016 and beyond. 

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Carol Preston:

Hello everyone and welcome.  I'm Carol Preston.  I'm a CLL patient for nine-and-a-half years now, and I'm reporting to you from ASH, the American Society of Hematology meeting. It is the largest blood cancer meeting on the globe, and in addition to the tens of thousands of researchers here many, many patients and patient advocates, including Brian McMahon.  Happily, Brian, you've not been a patient, but you have taken care of four patients…

Brian McMahon:

That's correct. 

Carol Preston:

…all with very, very different paths.  And starting with your mom, she really fueled you into the work that you're doing today.  

Brian McMahon:

That's correct.  

Carol Preston:

Can you tell us a little bit about her and the work, the Sparks people? 

Brian McMahon:

Absolutely.  Sure.  So my mother was diagnosed with multiple myeloma back in 2005. And at the time, she was a really high?risk myeloma patient, so two genetic mutations, a deletion in a translocation so a really poor prognosis associated with that.  Now, you have to remember, Carol, my mom was an outlier for patients, because she was an oncology nurse with 30?some years of experience, and she was a pharmaceutical clinical sports specialist as well as a salesperson for Amgen, so she really had the clinical side and the pharmaceutical side. 

So when she was diagnosed, she knew exactly who to call to find a clinical trial. And within two weeks of diagnosis, we were down at the University of Arkansas and enrolled in a clinical trial.  Now, you know, unfortunately, the end outcome was my mother passed away after less than two years with disease, but it was two years that we got with my mom that otherwise we don't think we would have had without her going on that clinical trial. 

Carol Preston:

But the paths of the other people with whom you have worked, it hasn't been as smooth a path.  

Brian McMahon:

That's correct, yeah.  So the other diagnosis, my father-in-law was diagnosed with pancreatic cancer. And the difference here was when we went to that doctor meeting, you know, at this point that was the fourth cancer patient we had cared for internally with the family, so we knew the right questions to ask, and clinical trials weren't even brought up in that initial diagnosis meeting. 

And so when we asked the doctor about that he said, well, he doesn't match any trials here at the hospital, but if you want to go on clinicaltrials.gov and do some searches, we'll be happy to help figure out if you might be a fit or help at the next meeting.  So we went home.  We went to clinicaltrials.gov, we put in pancreatic cancer, and we actually took the time to—you know, you can put in your ZIP code, you can put in your location and then how far away you want to search—we still had over 350 clinical trial matches after that fact.  

Carol Preston:

350…

Brian McMahon:

350.  Correct.  Right. 

Carol Preston:

…that a patient is supposed to sort through and figure it out. 

Brian McMahon:

Right.  So the question is do you then print out over a thousand pages of clinical trials of clinicaltrials.gov documentation for a 15- to 20-minute consultation with your doctor?  It's just a really difficult process for most patients, most caregivers, most families to go through.  

Carol Preston:

All right.  So two very different stories, two very different paths, and that is what fueled SparkCures.  

Brian McMahon:

Correct, yeah.  So we started SparkCures.  After my business partner passed away, within two months my father?in?law was diagnosed, and, unfortunately, we shut down my business that my partner, who had cancer, after he passed away. So I took a little bit of time off to figure out what my next step was going to be.  And really my plan all along was once I retired I wanted to do something on the cancer side.  I wanted to give back. 

It had always been a big part.  My mom was on the ONS, she was part of the LLS, she was really active, so we were really active as kids.  And what I really got to was what am I going to wait for?  My father?in?law was 48, my mother was 62, my business partner was 54, you know, there might not be a later.  So I thought why don't we do something now to really help patients.  And what we got to after meeting with doctors, with nurses, with patients, with pharmaceutical companies, we realized that there really was a need to help connect cancer patients and help them understand their clinical trial options.  

Carol Preston:

So very quickly, if you could tell us how SparkCures works.  

Brian McMahon:

Yeah, absolutely.  

Carol Preston:

Just sort of get through the detritus and get to the nut of it.  

Brian McMahon:

Really, at the end of the day, a clinical trial has a list of reasons you can join it and a list of reasons why you would not be allowed to join or participate in that clinical trial.  What we've done is we've actually gone in and coded that into our software product so that a patient can go and answer very patient?friendly questions.  

So for myeloma patients one of the big inclusion/exclusion criteria is what is your myeloma status?  Are you relapsed?  Are you refractory?  Are you relapsed and refractory?  Most patients have a difficult time answering these questions.  So we've spent a lot of time working with patients to ask that in a way that helps them, you know, where they don't need to know what that status is, but we can get to the end outcome of knowing what their status is. 

They answer some questions. They enter in certain lab values, their M proteins, their free light change, their creatinine and creatinine clearances. And what we've been able to do—the amazing thing, Carol, is on average if you go to clinicaltrials.gov you're going to get about 207 clinical trials for myeloma patients.  We've been able to deliver that down to 10 or less on every match that we do for patients. 

Carol Preston:

And is there an actually human voice at the end of that online experience to help you navigate? 

Brian McMahon:

Yeah, it's a great question.  We started on that side, and what we're doing now is we're web?based, we're going that, and we're bringing on nurse navigators in 2016 to help patients who maybe don't have Internet access or who find it really difficult to walk through that process.  So that is coming. 

Carol Preston:

Excellent.  Now, you're focusing on multiple myeloma.  There are so many blood cancers.  Any hope for the rest of us?  

Brian McMahon:

Yeah, absolutely.  And all that is coming absolutely.  So we're looking at leukemia, we're looking at lymphoma, all those things are coming.  Myeloma was our place to start to really understand how to help patients, how to communicate with patients, and how to help get them into these trials. 

Carol Preston:

Brian, you're so upbeat, you're so hopeful, and yet you've been caregiver to four cancer patients, many of whom are family members.  

Brian McMahon:

Correct.  

Carol Preston:

How do you stay so upbeat?  How do you stay so hopeful?  

Brian McMahon:

You know, I think that—my mom was a huge inspiration to me.  You know, as she was going through this it wasn't a pity party, it wasn't a—now, granted, she had her times.  There was one story I like to tell.  At 3 o'clock in the morning, I heard the vacuum sweeper running downstairs.  And I go down and—it was after she was on her dexamethasone, so she was on her steroid kick and she was cleaning.  And the joke in the family was we actually called her Mr. Clean with a bald head on steroids going crazy about cleaning, but it was never a pity party.  It was always how do we get through this, right?  How do we get through this, and how do we help other people as we're going through?  So from a very early age, that's what was instilled in us, right?  We just have to keep moving forward and help out any way that we can. 

Carol Preston:

Well, Brian McMahon, there are many, many patients who will see this who will thank you, and they'll be jumping on SparkCures, which, by the way, is a partner… 

Brian McMahon:

That's correct. 

Carol Preston:

…with Patient Power, and in the trial finder on the Patient Power website.  

Brian McMahon:

That's right. 

Carol Preston:

…so easily found, and we look forward to hearing more great news from you…

Brian McMahon:

Absolutely. 

Carol Preston:

…not only about multiple myeloma but other cancers as well. 

I'm Carol Preston reporting from the American Society of Hematology.  Thanks for watching. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on February 4, 2016