MPN Patient Café®: How Do You Find Trustworthy Information Online?

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Topics include: Patient Stories

In this MPN Patient Café segment hosted by Carol Preston, Andrea and her partner Denise share their tips and strategies for identifying credible MPN resources online. The panel discusses how to compare information with many sources and the importance of discussing learnings with your doctor.

The MPN Patient Cafe is a Patient Empowerment Network program produced by Patient Power. We thank Incyte Corporation for their support.

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Transcript

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:

Andrea, if we could start with you a little bit, rather than my launching into your MPN history, I will let the audience know that you have been working with this and through it for about eight years. But if you could introduce yourself and give a little bit of your history and tell us what brought you to this point.

Andrea:                 

Sure. My name is Andrea. I’m originally from New York; I live in Dallas, Texas right now. I actually have been fighting with MPNs for 18 years now. I started out with essential thrombocythemia 18 years ago, and then eight years ago it converted to myelofibrosis. During my ET battle, I should say that I was on anagrelide (Agrylin), and it worked really, really well. And I’ve been an advocate for myself and fellow patients since then, because these diseases are very tough and if you don’t help yourself, it’s hard to understand the doctor or get some information.

Carol Preston:   

Absolutely. You look great, and obviously you’re doing really well. We’re going to get a little bit into basically how MPN patients can really take advantage in mining for the best possible information. 

We know you’ve been very active in the Dallas area toward that end in helping with that. Before we dive into that, Denise can you just tell us a little bit about yourself and what your life is like, partnering with an MPNer?

Denise: 

You know, it’s normal in many, many ways and then there’s the occasional abnormality that comes up and it’s part of life, and you just take it in stride—or I take it in stride and just keep moving forward. Okay, so this is—some event may have occurred, and this is the way it is, and we’ll make adjustments and make it happen and just be sure to keep you as comfortable as possible and pursue nutrition aspects and things of that nature. I think it helps you stay 

Carol Preston:   

…in good health!

Looking great, looking great. Let’s focus a little bit—this is always what gives me my Maalox moment with the stress of knowing where to go to find what we’ll call trustworthy information. That’s a loosely defined term. Andrea, let me ask you first; how would you define trustworthy? Because there’s so much information out there, people drown in it and none of us got sick thinking now we have to earn the equivalent of a medical degree. We don’t have the time, the energy, the inclination; the emotions are raw. So how do you define trustworthy, and how do you get started? 

Andrea:                 

That is a great question. To me trustworthy, in the MPN world anyway, comes down to looking at different sources and comparing information. Being careful of anecdotal information, especially on the listservs, but looking up clinical trials or the MPN Foundation, or Patient Power where actual doctors are interviewed and asking a lot of questions of your medical provider, be it at a main institution like MD Anderson or Mayo, or your local hematologist.

Carol Preston:   

I was treated at MD Anderson, locally but then at MD Anderson, and you’re so lucky because you’re in the state with that great institution in Houston, Texas. So I want to—before you go on, I just want to ask Denise, are you involved in searching and making these comparisons of information as well?

Denise: 

I do on my end and I have to admit that Andrea is—she’s one of those anomaly persons that when she discovers something new, she goes into it deep and hard. She really does it totally, which is fabulous, and I really respect and admire her for taking that on. You know, I do go through the forums that I participate in, the medical workshops and of course doctor visits and things of that nature. And then when I have my own questions, I’ll go out and research stuff on the Internet just to satisfy my quest of information. 

I use a lot of the orgs, the .orgs and the reliable sources where again, as Andrea said, you get online, and there’s just a world of information there and comparing the information is probably your best bet where you get the same, consistent details time and again.

And you can say okay, this is a trusted source, because this is the same stuff I’m getting, or this is a leader because of the background or the providers that are putting this information out. So those are real important pieces to help me stay in line with her and kind of in the background, so to speak, where I’m pulling up stuff and making sure we need to take a little right turn here, maybe, or a little bit left to do this or that, and have we thought about this?

So we give it a different perspective and an overall view. Because as you said, you’re in the middle of this, and you’re overwhelmed with emotions, and that’s very intense.

Carol Preston:   

I want to go back, Andrea, to something that you both mentioned. One is getting your hands or zeroing in on reliable information. That’s the first thing. And then the second thing, because you both mentionedthis, is about asking a lot of questions.

Andrea, I know that you have spoken to patients one-on-one; I certainly have spoken to patients one-on-one for CLL. And a lot of times they’re very reluctant to do that. They’re uncomfortable either asking the authority, in this case that could be the oncologist or the hematologist, and they’re a little bit gun shy about doing that, because why would they question what the expert says. So that’s number one; I'd like you to recount your experience. Maybe that was you at the beginning? We’re going back almost 20 years. And then also this issue of reliability—it sounds like what a new patient especially, or what we as patients should be looking for is some repetition of information on these various sites. I think, Denise, you said perhaps steer clear more of the anecdotal and make sure you’relooking at the .gov, the .org, and so on.

So first this issue of questioning the physician, Andrea, I'd like to hear your experience and maybe what you’ve heard from others. 

Andrea:                 

Sure. When I was first diagnosed and they gave me this name of essential thrombocytosis, the first thing I said was: whoa, how do you spell that? And I wrote it down. I put it in Google search when I got home, and I started reading, and it was like reading a physics paper. I could get one word here and there. But I found the more I read, the more things started to make sense to me, and the more one site cleared up another site. So I started firstly of course to understand what the condition was, what the disease was. 

And then I wanted to know how did I get it, but most importantly how do I fix it, if that’s possible.

So I started looking at the different trials, mainly because I found out that was my only recourse at the time. And I was at MD Anderson, and I asked Dr. Verstovsek about a certain drug that I had read about, and he said we don’t have it here. I said okay, but it does this for me, and it helps with anemia. And I bugged him and bugged him. Every time I went, I'd say what about XYZ drug? 

And he’d say I’m trying to get it. I'd say okay, great. And he never told me the drug wouldn’t work, but he never told me it would work. And I did not push it hard. So that was kind of how my journey went. And he was very good. I had run across doctors and patients both. I have to warn patients about this. They will look at you with an insulted eye, like how dare you question me? 

And I think what a patient has to remember is we’re paying them. They are one expert among many, and you really have to be with a doctor or doctors that you trust, that will treat you like an intelligent person, that will answer your questions and help you—draw things out if they need to. If the doctor doesn’t do that, I leave. I go somewhere else. Because it’s my body, it’s my health, and I need somebody to work with me. That’s the way I look at it.

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 November 1, 2017