Patient Engagement: Educating Yourself to Access Better MPN Care

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Topics include: Treatments and Understanding

When patients engage in their health care, they’re likely to improve results with the ability to make informed decisions about treatment. Join us to hear Lindsey Whyte and Dr. Srdan Verstovsek share tools and resources available for MPN patients to stay informed and connected throughout their journey.

The Living Well series 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.

Beth Kart Probert:

I'd like to shift gears a little bit, and Lindsey I'd like to talk to you a little bit with your expertise in the field. Patients are newly diagnosed and you know, how do you convey to them the importance of educating themselves and their family and their friends? What would your message be?

Lindsey Whyte:

The MPN Research Foundation has extensive information on our website, and also when somebody registers through our online system.

And I’m not talking about the registry—just contacts us initially, we send out packets with information, and we will customize those packets according to a specific patient’s need. We also do our best to hook people up with local support groups or many times people come to us looking for a doctor or a specialist, and we’ll point them in the direction of online resources or others who may be able to help them locally. We have lots of resources available to patients through our organization, and also on our website and to the extent that we can’t help with a specific question, then we usually try and point someone in the direction of someone else who can.

Beth Kart Probert:       

I have to say that that’s exactly what I did. I found your website when I was newly diagnosed, and I registered. I got my packet. I was so excited, it had a lot of great information for me. I also got some wristbands, and I just felt connected.

It was one of the first organizations I found, and it just really gave me a sense of really being connected.

So, Dr. Verstovsek, I would like to talk to you a little bit about how do you advise your new patients about identifying trustworthy info as far as…we could all go on the Internet and go willy-nilly. I was convinced I was dying after two minutes on the Internet. But you must get a lot of that. You must get patients asking you what do I do, how do I get information. How do you guide them?

Dr. Verstovsek:

Just towards my endorsement of what we have discussed so far in terms of education and the patients’ engagement, I have seen some of you in my own clinic. And you know very well that to every new patient, because this is a chronic disease or diseases, the patients have to be engaged.

And I always endorse them to become a partner in what we are trying to do together to control the disease and eliminate the problems, and make people enjoy life fully for as long as possible with a good control in signs and symptoms. And therefore, engagement and partnership with your doctor and self-education through support groups, through symposia, through pamphletsthrough web is increasingly important. Because the decision-maker is the patient, after all. The doctors are here to support.

And if they can partner together throughout their lives and become good friends, and I always seem to joke about it—we become good friends for the rest of the time. We actually do, and we engage together, and we try to educate each other. I learn from the patients, patients learn from me, and we go through life together. And so an educated patient is the one who is the best patient, because we can participate together. And the sources are increasingly available to all of us.

What we are doing here today, Patient Power on the web, myMPN Foundation through the web, through symposia, through pamphlets, through educational material, participating in patient symposia through educational foundation—those are also available apart from MPN Foundation. And then going to the academic centers and their websites: MD Anderson, Mayo Clinic, University of New York City. There are a number of very well-established academic centers that have very nice academically-driven websites for education of the patients.

It’s not necessarily to engage at the professional level where the doctors would go and educate themselves about these rare conditions, but also the patient side of the academic sites are very well informative for the patients. This is where you get up-to-date information from very well-established professionals that are engaging in education of the patients.

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 7, 2017