Dr. Irum Khan

For patients with cancer, especially those with MPNs, knowledge is power and getting this knowledge on their disease often comes in the form of attending education events or conferences where they can connect with medical professionals and get multiple opinions for free, said Dr. Irum Khan.

, highlighted the importance of educating patients with MPN but also stressed that this education needs to be made accessible to vulnerable patients as well and accommodate for their needs.

, Khan highlighted this and discussed how these events illuminate what is important to patients that clinicians wouldn’t have otherwise known about.

But at the same time, it's also really interesting when patients come up to the podium or anonymously ask their questions, or sometimes just come up and talk about an experience they've had. I think what we think matters, it's humbling to be in the clinic, but we think what matters isn't always what really matters to patients.

A lot of times, there's issues in these outpatient medications and the long term financial burden and toxicity of these and sometimes the dialogue gets really interesting, and a lot of back and forth about how different countries handle this, but I think that just understanding some of the real world problems our patients face is something that I at least get a lot of.

And then you know, patients come up and ask you questions on the side and I always encourage my patients to go to these because in my opinion, it's a way to get like five different medical opinions in one room for free. So, I try and push my patients, and sometimes it's a little challenging because a lot of our patients are minorities and they don't have access to the resources and sometimes for them getting to a faraway suburb is a big deal.

But these foundations have been really great about working with us and trying to make sure we have at least one in sort of what we call the Medical District area of Chicago where we have the county hospital or we have UIC, something in that location so that our patients really can attend.

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MPN Hero Dr. Irum Khan discusses how education events for patients with cancer are helpful to both the patient and the clinician.
 

Attending Education Events is Beneficial to Patients and Clinicians

At its 2019 MPN Heroes recognition program, 

 had the chance to honor the heroes who make a difference for peoples with rare blood cancers known as myeloproliferative neoplasms (MPNs), including researchers in the field — like Dr. Irum Khan &mdash; who work intimately with patients.

An assistant professor of clinical medicine at the University of Illinois Cancer Center, Khan specializes not only in treating MPNs but also in working with patients with these conditions who have limited resources to put toward their treatment. The University of Illinois Cancer Center treats a patient base that includes vulnerable populations whose members are often unable to advocate for themselves. In addition to conducting clinical research for the center, Khan steps in to help provide these patients with the logistical and financial resources they need to continue their treatments. Through that role, she has become a strong advocate for personalized care.

spoke with Khan at the MPN Heroes event about how she has come to look at each patient as an individual and found ways to understand and address their needs.

The burden of symptoms our patients live with is sort of an emerging field. I think we're learning more about it now. When I was in my early years of training, the focus was more on the biology and the immediate medical complications, but (now,) with the symptom score and the utilization of the symptom assessment form, we're really able to hone in on what's bothering our patients.

I feel like this field is a little bit unique in that patients can have very different issues. They can have the same disease, the same mutations, but have a very different set of clinical symptoms. And at the end of the day, that's what they want fixed. They want their problem addressed.

Sometimes, just kind of ticking off the box to make sure we lower their risk of a clot and keep their blood counts below a certain amount may not give them the tangible benefit that they were seeking. They may actually really want something to fix the fact that they have headaches, or they have ringing in their ears, or they're constantly itching, or some of them have bone and joint pain.

It’s been a learning curve for me, with the trials and the adoption of the symptom assessment form and meeting with colleagues nationally and seeing how they incorporate this into their clinical practice, because it's not very routine for hem/onc physicians to have a symptom assessment form in the workflow of a busy clinic. They're trying to figure out logistics of how people are doing it, when they're giving it to their patients.

Trying to incorporate it into my clinical practice has been really useful, because it touches on many things that I may not, in the course of a clinic, really hone in on. And this will just direct me to that, and I think that that makes it a better and more therapeutic alliance.

I also think it sets a good example for our trainees to realize that, beyond the sort of book knowledge and the board question-type stuff, there's a patient with a whole set of symptoms that we have to address, because that patient's not going to be happy until we do that.

Patients with rare blood cancers are not all the same, and this understanding has helped Dr. Irum Khan become an advocate for people with these conditions &mdash; and an MPN Hero.
 

Dr. Irum Khan

Attending Education Events is Beneficial to Patients and Clinicians

MPN Hero Advocates For Individualized Patient Care

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