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How Do MPN Patients Get Information?

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Published on January 30, 2020

Key Takeaways

  • The MPN Patient Online Questionnaire was a first-of-its-kind survey that was turned into academic poster and presented at ASH 2019.
  • From the survey, researchers found that patients mainly use Facebook and YouTube while physicians use Twitter.
  • You can participate in the survey here and see the findings shared at ASH here.
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Myeloproliferative neoplasms expert Dr. Naveen Pemmaraju, from The University of Texas MD Anderson Cancer Center, partnered with Patient Power to create a survey to find out how MPN patients are using online resources to guide their care.

Watch as Dr. Pemmaraju shares results from the first-of-its-kind online survey, that were also turned into academic poster and presented at ASH 2019. The de-identified data was compiled into a poster and shared at ASH 2019 to help doctors understand gaps in these resources.

 

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Transcript | How Do MPN Patients Get Information?

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.

Esther Schorr:

Hi.  This is Esther Schorr.  I'm at ASH 2019 in Orlando, and I'm here with my sidekick Andrew, and we're very excited to have two additional wonderful people with us to talk about a survey that Patient Power has collaborated with MD Anderson in Houston on related to MPN patients.  So, there's Dr. Pemmaraju, who is from MD Anderson, and Theresa Clementi from Patient Power.  

Andrew Schorr:

They are authors… 

Esther Schorr:

They are. 

Andrew Schorr:

…of a scientific study. 

Dr. Pemmaraju:

Yes.  

Andrew Schorr:

So, Dr. Pemmaraju, what's the study? Because it was accepted to be presented here as an abstract, so what is it? 

Dr. Pemmaraju:

Sure.  Thank you, Andrew.  So, on behalf of Patient Power and our group at MD Anderson, I'm really excited to be able to discuss this.  So being presented here at ASH 2019 is a big deal.  It was accepted as an abstract for a poster presentation.  And what it is, is it's a first‑of‑its‑kind online‑only survey that actually you guys have been doing for a number of years. 

The innovation here is two‑fold.  One is that we wanted to do it as an academic partnership to be able to be cleared by IRBs, presented at national meetings, published for data.  

Andrew Schorr:

International Review Board.  

Dr. Pemmaraju:

Thank you very much.  All right.  So, for folks out there it is all identified by the fancy computer algorithm that she came up with.  And then the second component of it is we are trying to ask new questions about our patients' knowledge, which is what you guys have been focusing on for so long, and then perceptions about what it is are there gaps in the understanding from where I am as a provider and where they are?  And we've uncovered some interesting things so far. 

The first thing I want to share with you is that we have, thanks to you guys and your platform, almost 1,000 patients now that have filled out the online survey.  And remember, it's not the caregivers, it's actually the patients, because that's question one on the questionnaire survey.  This is amazing. When we talked to our statisticians, we hypothesized that maybe 100 people would fill it out, and we would be thrilled if 400 did, and we got to 400 how quickly after we opened the survey? 

Theresa Clementi:

Probably within like two weeks. 

Dr. Pemmaraju:

Within two weeks. I remember, she remembers too, the phone call. We have a behavioral professor, a biostatistician, they actually said the word wow.  

Theresa Clementi:

Yeah, which is rare.  

Dr. Pemmaraju:

Which is rare.  So that's the first part.  So, can we get some traction in our MPN community of asking questions?

Now, the second thing is what are the questions? So, what we did is since this is a new survey we met with our biostatistician.  The first 20 caregivers—well, it's really patients, so no caregivers, so the first 20 patients who filled it out we stopped the survey.  So that was called the design phase built as an internal validation or so‑called “we're throwing a new thing out there, and let's see how it went.” 

Esther Schorr:

So you took that as input? 

Dr. Pemmaraju:

We took that as the input.  And so we both, with the statistician and the behavioral team, met and looked over everything and said are folks able to answer this and are the questions meaningful, and we found overwhelmingly yes and yes.  It was easy to fill out.  It's a little less than 40 questions, doesn't take too long.  How long do you think? 

Theresa Clementi:

Probably less than five minutes.  

Dr. Pemmaraju:

Less than five minutes, maybe 10 minutes at the most.  Then we then moved into the expansion phase, which is how we got to this 1,000-patient number.  

In terms of findings, it is very interesting, and I think that this is going to be something that you and I and our team together with Patient Power will report, two major findings.  One is that, my goodness, there is a hunger for and a high usage rate of social media online resources not as a luxury in the diagnosis but as an essential part of the patient journey. 

Andrew Schorr:

That's your tool kit. 

Dr. Pemmaraju:

Tool kit.  And we teased that out a little bit more and part two of it is, I find to be interesting and you know this too, is that where our patients and caregivers are is not necessarily where, for example, I am or Dr. Ruben Mesa.  We found that providers often prefer venues like Twitter and LinkedIn, so more, if you will, the professional venues, but our patients are preferring YouTube and Facebook, maybe possibly more the old‑guard, traditional venues.  We're finding out why. 

Facebook and YouTube have unlimited characters, right?  You can either consume an unlimited amount, or you can put out there an unlimited amount.  That's important, and they are easier to use.  Twitter, what we found is that it's a little more esoteric for people, and that's great that Ruben Mesa and I are using it. But as we found patients and caregivers are starting to uptick on all these, so there are even newer ones, right?  Instagram, all of these things. 

So, we're realizing that to get the education out there we need to go where our patients are.  Because if you have a rare disease and you look up myeloproliferative neoplasm and your local doctor has never heard of it, that's a scary time.  And what Patient Power has done, and you know my work is there's no such thing as a rare disease.  It's just a disease.  It's what you, your spouse, your mother, your sister is facing.  It's not rare if it's happening to you or to your family.  

And what we are finding is that people want more information.  They're seeking more information than what's available out there, and this survey is uncovering that.  

Esther Schorr:

That's awesome. 

Andrew Schorr:

Wow.  Okay.  So, first of all, I just want to say thank you so much for the collaboration between the two of you, biostatistics, IRB back at MD Anderson, and back home.  But, MD Anderson Houston, were they pleased? 

Dr. Pemmaraju:

Yes.  One of the great things about this, and I think it's going to be used as a model, is it uses zero infrastructure and zero cost.  That's one amazing thing with this partnership with you and your expertise.  This is all done online.  So it's a paperless, fully online executed protocol, so no wasting of resources or money or who's watching it.  We convene a once‑a‑month board to look over all the data.  We take the minutes, and we submit that.  

So not only what I told you in terms of content but also the process, which did take us a while to go through, to learn, has to be secure, so patient‑identified data.  I'm the lead author as the academic person vouching for it, and the fact that it doesn't require any cost or infrastructure, yes, you're right, it will be used as a model for people later on. 

Esther Schorr:

So if it will be presented here, all of the 25,000 hematologists and medical professionals will see it, how if a patient and their family want to see what those insights were, where can they see it?  

Dr. Pemmaraju:

Yes. 

Andrew Schorr:

What do we do with it? 

Esther Schorr:

Are we going to have it on…

Theresa Clementi:

So we put it on—we should put it on Patient Power.

Andrew Schorr:

Okay. 

Esther Schorr:

Okay.  Done.  

Dr. Pemmaraju:

That's a good course. 

Theresa Clementi:

And we can continue to have people fill out the survey too, because we're almost at a 1,000 mark, but I think it's like 948.  I would love to get it to be 1,000 or maybe we can even beat our goal. 

Andrew Schorr:

So how do they participate in the survey? 

Theresa Clementi:

So, I'll put a link on this video, or we'll put it on social media.  

Andrew Schorr:

All right. 

Theresa Clementi:

Or both.  

Andrew Schorr:

Co‑founders of Patient Power, and a patient and a care partner, we're devoted to all of us informing these guys like at MD Anderson with the rigor of a scientific survey so that this can inform practitioners and patients and family members so we work together for better care. 

Dr. Pemmaraju:

That's right. 

Andrew Schorr:

Thank you. 

Dr. Pemmaraju:

Thank you, Andrew.  Thank you, Esther. 

Andrew Schorr:

Thank you so much.  All right.  And this is the way we all work together. 

Andrew Schorr:

Andrew Schorr. 

Esther Schorr:

Esther Schorr. 

Andrew Schorr:

And… 

Esther Schorr:

…knowledge can be the best medicine of all. 

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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