Dr. Idoroenyi Amanam: Why Is It Important for You to Empower MPN Patients?

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Dr. Idoroenyi Amanam: Why Is It Important for You to Empower MPN Patients? from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) care providers empower their patients? Hematologist-oncologist Dr. Idoroenyi Amanam from City of Hope shares his perspective of his experience with a family member going through cancer. Dr. Amanam explains how that experience helped mold his approach to informing and empowering patients in their cancer journeys.

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Dr. Ana Maria Lopez Why Is It Important for You to Empower Patients

Transcript:

Dr. Indoroenyi Amanam: 

I know from personal experience, I’ve had a family member who had cancer and had to struggle with therapy and some of the complications associated with therapy. And I felt that her doctor was really good with giving a…giving us an understanding of what was up next for us, giving us an understanding of what the disease meant for her, and really just helped us wrap our heads around what was about to happen. And I think that’s tough when you get a diagnosis and things have to happen very fast. I think we…you’re diagnosed by possibly an ER doctor or a general practitioner. Then you’re sent as a referral to an oncologist who has 30 minutes to talk to you about your diagnosis and ready. Then they scheduled possibly for you to get a port and/or you have to get imaging, or you have to go and get another biopsy, or another procedure.

And a lot of the time that you’re spending at the hospital is really by going to these different appointments, but actually not really talking to anyone about what this really means. And so from my own personal experience of going through it with a family member, I think it’s really important to try to help patients understand what’s really going to happen, what this means for them long term, what the treatments…what the complications are associated with that.

And I know that most of our…most of my colleagues, they do that. And I know that we all want to ensure that our patients have great outcomes, but I do think that having that personal experience does give me some type of connection to patients in possibly in a different way. And so I just want to empower them with understanding that this is something that wasn’t expected. There are a lot of things that have to happen. Here’s what we need to do, and I’m there for you, and I’m there to support you in any way possible that I can to help you get through this.

Dr. Silvina Pugliese: Why Is It Important for You to Empower Patients?

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Dr. Silvina Pugliese: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

How can skin cancer care providers work to empower their patients? Expert Dr. Silvina Pugliese from Stanford Cancer Center discusses her approach to patient empowerment, healthcare professionals she partners with, and methods to help enable informed patient decisions.

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 Dr. Ana Maria Lopez Why Is It Important for You to Empower Patients

Dr. Ana Maria Lopez Why Is It Important for You to Empower Patients

Transcript:

Dr. Pugliese:

I do think it is a great honor to care for patients, and I do think of it as my duty to empower patients or the way I think about it, to inform patients and allow them to come to their own conclusions and decisions based on the information that I provide. So the ways that I go about doing this are, first, I think it’s really important to establish a relationship with patients. I don’t have the fastest clinic visits, but I know a lot about my patients and they know a lot about me, and I do think that that relationship is a really important foundation for the trust that is needed in order to have a very secure patient-and-doctor relationship.

As part of that, I do listen to what patient concerns are, because I think that if we don’t identify what patients are fearful of, what they actually are very comfortable doing, if we don’t hear what their concerns are with certain treatments, then I think all the education that we do is really not going to be helpful if it doesn’t align with the patient’s treatment wishes and desires and what they’re comfortable doing. And then I provide information. So basically I will provide as much information as I have and know and always connect patients with someone who knows more than I do in their particular area of concern and who can provide information beyond what I know for certain situations. So often I will partner with other dermatologists, surgical dermatology, oncology, radiation oncology, medical oncology, surgical oncology, just to make sure that I have resources available for patients when they are making a decision.

So by doing those different things, I hope that I’m empowering my patients to feel better about their medical care, to feel like they are receiving the best medical care and to feel comfortable in making some really difficult decisions. It is important for me to do again, because I think that is my job, it’s my duty, I don’t take it for granted. And I think that it is the least that we can do when we’re being really entrusted with some very like vulnerable and personal information that patients are providing to us.

Dr. Nizar Tannir: Why Is It Important for You to Empower Patients?

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Dr. Nizar Tannir: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) can be a devastating cancer, but healthcare providers can help make a substantial impact. RMC expert Dr. Nizar Tannir from MD Anderson Cancer Center shares how he creates a positive, healing relationship with patients and what he views as the future of RMC patient care.

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Transcript:

Dr. Tannir:

It all starts with listening to the patient and taking their history. And their symptoms very seriously not to dismiss what they tell you. That’s the first step patients who seek our help, they come to the provider, they come to the physician to help them seeking healing. I think it’s fundamental to listen, listen carefully take every symptom they report to us seriously. And when we think of a diagnosis of RMC as physician first, because the patient comes first before anything else. We provide them with all the information we have, we may not have all the information about their diagnosis or about the future.

When they ask us what will the future look like? What should they expect? We may not be able to answer that the question, but we can still provide them with help and take their question seriously and say, “I don’t know the answer to your question, I don’t know what the future will bring, but I’m going to tell you, I will not leave any stone unturned until I get to the bottom of it. And until I am able to find an answer to your question. “Then second, for young investigators who aspire to have a career in medicine, in medical research, in scientific research RMC is the most fulfilling field that you can make an impact on humanity.

For all of you who are ambitious, aspirational, hardworking, well-trained, smart, want to make a difference in the world and help humanity, RMC will provide you with a golden opportunity to make that difference, because patients with RMC are young, are all active before they come to us. Sick, debilitated, devastated with devastated family members. It is an aggressive disease that if not treated aggressively, urgently, unfortunately, patients may not make it. So it behooves us to provide them with the best care and research will give us the opportunity to, in the future, hopefully cure this disease once and for all. And what’s more rewarding for a career than seeing young patients achieve a cure from a devastating cancer that may, unfortunately, take their life away in few months or a year or two, if they can live for many many years to their fullest potential as a normal human being, to live to the final aging and give the society back, its citizens to be productive in society.

Give those young individuals the chance to go back to work or back to college. Maybe start a family, get married and have a family and have children. What is more rewarding than this? I think empowering yourself. Empower yourself with that golden opportunity. Empower yourself with that career that can help you make a difference in the world so that the world will not be deprived of young people like Herman Connor who could have not had that opportunity but now is alive and well and a productive member of society and a citizen 11 years after diagnosis. So imagine what you could do to help another patient like Herman and give that patient the opportunity to be cured.

Dr. Ebony Hoskins: Why Is It Important for You to Empower Patients?

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Dr. Ebony Hoskins: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

 Patient empowerment is a vital part of the patient experience. Ovarian cancer expert Dr. Ebony Hoskins from MedStar Health shares her methods for moving her patients to empowerment and her reasoning for her different empowerment methods.

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Transcript:

Dr. Hoskins:

I empower my patients by, number one, educating them on their diagnosis and providing information regarding any treatment options side effects. So one, education. The second thing, how I empower my patients is allowing them to ask questions, whether they think it’s an easy question or a hard question. So having an open discussion about what…

I empower my patients by educating them on their diagnosis, the treatment options, side effects. So number one, education. Number two, I think we need to have an open communication. So allowing them to ask questions, whether they think it’s an easy or a hard question. And another part of empowerment is making sure they have another set of ears. Sometimes the shock and awe of a diagnosis, they can’t hear everything that you say.

So having either a close family member or a friend that’s there for a visit that can kind of help advocate for them and also be a second pair of ears. I think it’s all important in terms of having a good trusting relationship to empower our patients, to let them know that they are involved in the process and also know that they have a trusting doctor that they can rely on for their care going forward.

Dr. Leigh Boehmer: Why Is It Important for You to Empower Patients?

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Dr. Leigh Boehmer: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

How can healthcare providers help with patient empowerment? Expert Dr. Leigh Boehmer from Association of Community Cancer Centers (ACCC) shares her perspective about patient empowerment and methods they have used at ACCC to help empower patients.

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Transcript:

Dr. Leigh Boehmer:

At ACCC, we’ve made a commitment to including patients and patient advocates in all of our ongoing educational initiatives, we no longer want to create or disseminate resources that weren’t first designed and vetted within communities for which they’re being built, and we also believe in rooting all of our work in health equity. Because all people deserve to be offered safe and effective cancer care, and I think…I feel so passionate about patient empowerment because I identify as a cancer survivor myself, I have my own patient story, and, unfortunately, cancer has touched the lives of so many across the globe, and so I advocate for recognizing patients and caregivers as vital components of any care delivery team, and I  think it’s so critical because to be honest, we’re always going to be stronger together.

Dr. Ana Maria Lopez: Why Is It Important for You to Empower Patients?

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Dr. Ana Maria Lopez: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Can myeloproliferative neoplasm (MPN) care providers take a different approach to hierarchical patient-provider healthcare? Expert Dr. Ana Maria Lopez from Sidney Kimmel Cancer Center provides insight to the approach she takes to help empower patients in their care experience.

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Transcript:

Dr. Ana Maria Lopez:  

I think, I really see myself as a facilitator of the healing process, the patient is the expert in their disease, in their illness process, they are living it every single day. And by having the patient, kind of like what we said earlier, you know the patient has questions, or the patient comes in with a list of questions, that’s great, because the patient is activated…is empowered enough to say, “Hey, these are my concerns.” So I think having a person get to that space or helping them get to that space is really, really important, and then what I can do to help with that is one, is simply to encourage that, that the patient is the expert in their own disease, and how they want to, I want to understand what is the experience like for you? What are your goals, what are your needs, what is most difficult or least difficult, and what is it that we need to address? So that I’m really partnering and really understanding from the patient’s experience, so I think that we’ve had such changes and there used to be the physician and the patient, and very hierarchical.

I tell you what to do. There’s so much information now, and there’s really more of a respect, and I think that’s really important, that respect that we are partners. And ultimately, this is about you, this is about the patient. So “How can I help you?”  is I think my approach.

Dr. Krisstina Gowin: Why Is It Important for You to Empower MPN Patients?

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Dr. Krisstina Gowin: Why Is It Important for You to Empower MPN Patients? from Patient Empowerment Network on Vimeo.

Empowerment for myeloproliferative neoplasm (MPN) patients is a vital part of their care, but how can providers help with this? Dr. Krisstina Gowin from the University of Arizona shares key ways that she helps empower her patients and explains some reasons why patient empowerment is important in their care.

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Transcript:

Dr. Krisstina Gowin: 

I think the first key to empowerment is education. And so anytime I meet a patient, I spend a significant amount of time really making sure they understand their disease and what are the treatment goals, and how do we best achieve those together? And I think for MPNs in particular, that I want them to understand that, yes, we want hematologic response, we want to control your blood counts and your numbers, we want to reduce those thrombotic complications, we want to control your symptom burden, so so important, your quality of life and symptom burden is part of the disease management.

And so I want them to understand what is symptom burden, and how is it measured, and how do we best achieve chronologic measurements? Do they do that at home? Is it best in clinic, are they going to be journaling? So symptom burden and measuring, and then the other is wellness and the management of cardiovascular risk factors, and so education around all of those for my MPN patients.

And then why is it important while it’s important because we want our patients to feel empowered, we want to feel like they are driving the bus and contributing to their own survivorship and wellness, and so how do they best do that is through education and then again, getting the tools they need to really navigate their journey in the most precision and personal, personalized way as possible, and so that’s really my strategy is education and empowerment.

Dr. Heather Wakelee: Why Is It Important for You to Empower Lung Cancer Patients?

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Dr. Heather Wakelee: Why Is It Important for You to Empower Lung Cancer Patients? from Patient Empowerment Network on Vimeo.

How can healthcare providers continue improving patient-provider communication? Expert Dr. Heather Wakelee shares methods she has used to help empower her patients and to improve communication with her patients. 

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Transcript:

Dr. Heather Wakelee: 

So, to me empowering patients is about having a two-way communication with patients at all times, and never coming in and telling them that we’re doing something and walking out of the room, but coming in and asking, first, how they’re doing, questions they have, and then going through, these are the things I’m thinking, and why I’m thinking about them and what I’m suggesting. And then turning it back to them so that they can respond and ask additional questions.

So that to me, it’s that two-way communication is how I empower patients, and it’s absolutely critical, because if you have someone on a cancer journey and they don’t know where they are, why they’re there, or where they’re going, then they’re feeling lost, and it’s really important for people to understand the journey as they’re going on it, at least the parts that we can’t understand, there’s plenty that you can’t, it’s still a scary journey, but what we can do as care providers is to give patients the power of understanding and that free communication, that’s how I look at it.

Dr. Nirav Shah: Why Is It Important for You to Empower DLBCL Patients?

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Dr. Nirav Shah: Why Is It Important for You to Empower DLBCL Patients? from Patient Empowerment Network on Vimeo.

 How can diffuse large B-cell lymphoma (DLBCL) care providers empower their patients? Expert Dr. Nirav Shah of the Medical College of Wisconsin explains methods he uses to help patients gain confidence and to create a relationship of collaboration and trust with patients.

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Transcript:

Dr. Nirav Shah:

So when I meet a new patient with diffuse large B-cell lymphoma, whether it’s in the frontline or in the relapsed/refractory setting, my main goal is to develop a partnership with them. Yes, I am the expert and the person who has knowledge on how to treat the disease, but the patient is a person going through it. And so what I try to do is educate them, review the options, and then guide them and try to help them come to a decision as to what is that best treatment there is, but again, with my educated guidance. And often patients need to make that decision themselves, especially our older patients who may have other values about how they want their life to be in their seventh or eighth decade.

And so what I try to do is have this collaborative discussion where I review the options and sort of say, “Well, this is what I think is best.” Why do I think that’s important? I think that patients today have access to a lot of information, and they’re going to be able to read a lot of things, and I think it’s important to be honest and up front that often there is more than one option for their disease, whether it’s frontline or relapsed, and then help them understand why I’m choosing a particular pathway for them and giving them that ability to make that final decision about, this is the way that I want to proceed.

By empowering them, I think it makes them a partner in their care, in the care that you’re providing them, it creates trust in a relationship between an oncologist and a patient, which is just so important to have because without having that trust it’s difficult to ask these patients to sacrifice their health, sacrifice sometimes important family events to be able to do the treatments that we’re prescribing. And so that’s sort of my approach, is through good education, review of information, through guidance, but ultimately allowing them to make that decision as to what they think is the best path among the options that I presented. 

Why Is It Important for You to Empower MPN Patients?

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Expert Claire Harrison: Why Is It Important for You to Empower MPN Patients? from Patient Empowerment Network on Vimeo.

How can empowering patients be important? MPN expert Dr. Claire Harrison from Guy’s and St. Thomas’ Hospital in the UK shares benefits of empowering patients and how health outcomes can be improved through empowerment.

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 How Do You Empower Patients?

 

How Do You Empower Patients?

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Expert Claire Harrison: How Do You Empower Patients? from Patient Empowerment Network on Vimeo.

How can patients be empowered? MPN expert Dr. Claire Harrison from Guy’s and St. Thomas’ Hospital in the UK shares ways providers can help empower and provide support to patients for their best care.

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