Tag Archive for: patient empowerment

Dr. Yaw Nyame: Why Is It Important for You to Empower Patients?

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

Patient empowerment is a vital part of care, but how can healthcare providers help? Prostate cancer expert Dr. Yaw Nyame with the University of Washington shares his approach to patient care and connections that he provides to help ensure optimal patient outcomes.

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

Dr. Danielle Brander: Why Is It Important for You to Empower Patients?

Dr. Danielle Brander: Why Is It Important for You to Empower Patients?

Transcript:

Lisa Hatfield:

Dr. Nyame, how do you empower your patients and their care partners? And why is that important? 

Dr. Yaw Nyame:

I think the best way to empower patients and their care partners is just by giving them the time. My clinic always runs late…I’m not sure that’s something I should brag about but it always runs late, and when I come into a room, I always say, “I’m sorry, I’m running late.” I usually explain if someone needed more time before then, and I always end that with, “I’m going to give you the same time that you need to answer all your questions and have your needs met as the last person, and so don’t worry about what the clock says about when your appointment was supposed to be. Let’s just cover what we need to cover.”

I also jot quite a bit of notes, a lot of families come in with notebooks and they’re writing everything down, and I try to actually have some notes that are individualized to my patient, their particular cancer and what are my recommendations down on a sheet of paper that I give to them. It’s almost like a deliverable for that visit, which I think oftentimes takes the burden of the patient feeling like they’re the one that has to collect all this information, and it’s almost like I’m going to be in charge of collecting this and giving it to you at the very end of our visit.

And then lastly, I’m really big on trying to connect folks to the resources that they need socially or clinically, and so everyone gets a list of vetted resources to read more or to go back to if they have questions, everyone gets connected to advocacy organizations that I do work with and trust, and then lastly everyone gets my contact info, sometimes a cell phone number, sometimes an email, something where they feel like they can get reconnected to me. That’s my approach, some people would say that’s too much, but I find that the more ways I can allow patients to feel like I’m accessible, that I’m at their level, that I’m not some super human, whatever, but I’m just like their neighbors or friends, the people that are in their community, the more empowered they are to ask for the things that they need and ultimately have a better clinical experience and outcomes.

Dr. Sameh Gaballa: Why Is It Important for You to Empower Patients?

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

How can cancer experts help empower patients? Expert Dr. Sameh Gaballa from Moffitt Cancer Center shares his perspective about the role of physicians and why patient empowerment is essential in shared decision-making for treatment.

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Related Resources:

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

 Dr. Gabriela Hobbs Why Is It Important for You to Empower MPN Patients

 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. Sameh Gaballa:

So our role as physicians is really we have to put in front of the patient and also the referring physicians all the information and all the options. And at the end of the day, it’s really the patient’s choice. But our role is to try to walk them through it so that they have the…all the information and all the tools they need to make the right decision for themselves. Because not every patient is going to be the same. There’s always going to be other factors that we have to consider that the patient would really be the one that knows about them so social issues or someone who travels a lot or a caregiver situation.

So all these things, because we’re dealing with human beings at the end. So when we’re trying…we have to assess the whole patient’s situation, not just medically, but also from all other aspects to arrive at the correct decision. And again, at the end of the day, it’s really the patient’s decision to make the call. And we, again, we try to educate them on all the treatment options and all the data, so they really know why, what our recommendation is stemming out from.

Key Resources for Small Cell Lung Cancer Patients and Families

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Key Resources for Small Cell Lung Cancer Patients and Families from Patient Empowerment Network on Vimeo.

What’s important for small cell lung cancer patients from underrepresented communities to know? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares advice for patient resources, his perspective about lung cancer stigma, and ways to mitigate issues with stigma.

[ACT]IVATION TIP

“…make sure that you ask your doctor, ‘Well, what about palliative care? What about social worker?’ or ‘I’m having trouble with this or that. Who can help me with this?’”

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 Woman doctor speaking with woman patient.

Advice for Small Cell Lung Cancer Patients Considering Clinical Trials

Transcript:

Lisa Hatfield:

What key resources and support services do you typically recommend or provide to SCLC patients, particularly from underrepresented communities following their diagnosis?

Rafael Santana-Davila:

That is a good question that I don’t know the right answer to. So part of the resources that we share with the patient is a visit with a social worker, a visit with a nutritionist, a visit with our colleagues in palliative care, that they’re all part of treatment of the patient with cancer that is available both for patients of underrepresented communities or other patients.

So that is the activation tip for that is make sure that you ask your doctor, “Well, what about palliative care? What about social worker?” or “I’m having trouble with this or that. Who can help me with this?” And like we said before is a patient empowerment is…a patient that is empowered is a patient that asks all those questions and receives more help. There’s a lot of help that is out there and the key is to connect those individuals.

Lisa Hatfield:

What is your advice for a patient living with small cell lung cancer in rural areas who might not have access to state-of-the-art cancer care?

Rafael Santana-Davila:

Yes. So first of all, although people living in rural areas do not have access to major cancer centers…or let me rephrase that. They do not live in major cancer centers. Thanks to technology, they do have access. How? With telehealth. A lot of things that I do, which is medications, they don’t really have to see me for treatment. I can give advice on the treatment that can be instituted anywhere. So patients that live, again, in Eastern Washington, which is a rural part of the state, can see me through telehealth, and I can help them and their physicians who are not sub-specialists to direct their care.

And again, it’s important to know that it’s not that we’re smarter than the general community oncologists. We’re not. We just have more experience in this disease. We’ve seen a lot of things that happen, so we are able to recognize things when they happen and just have access to more clinical trials. So the activation tip for that question is make sure that…we said that before, that you seek a second opinion.

And that may not involve travel for many hours. That may be as simple as a telehealth appointment with a major cancer center of such state to know what is available. And also know that many clinical trials can now actually pay for lodging and pay for transportation to those centers. So although it’s going to be trickier for them to receive them, living in a rural area does not mean that you’re not eligible for that.

Lisa Hatfield:

Have you encountered any misconceptions or stigmas related to small cell lung cancer within underrepresented communities? And how do you address or mitigate these issues with your patients?

Rafael Santana-Davila: 

There is a lot of stigma in this disease. We know that in the great majority of patients with small cell lung cancer and lung cancer in general, there is a smoking component to it. So patients feel that this is something that they brought upon themselves sometimes and there’s a lot of stigma associated with it. And that is not true. Yes, this is a smoking-related condition, but smoking is an addiction. Patients do not smoke because they want to. They smoke because they get addicted to it.

Everybody that I’ve met who’s a smoker at some point has wanted to quit and they cannot quit, not because they don’t have the willpower, or not because they’re weak, it’s because they can’t. This is an addiction. And it’s actually cancer, both small cell and lung cancer happens in the minority of smokers. So it’s important to know that this is…yes, quitting smoking could have prevented this cancer, but quitting smoking is nothing that is easy. And even if they quit smoking, this could have come.

So it’s important to patients to know that this is not…they should not blame themselves. This is both for underrepresented minorities and the patients at large. Don’t blame yourself for this. This is nothing that you could have prevented. And this is not your fault that this happened to you.” The activation tip for this is there’s a lot of what patients need to talk about, a lot of things, and these are hard conversations that you need to have. They’re not comfortable many times, but you need to open up. You need to have these conversations with your family, and you need to really say what’s in your heart. So that would be my activation tip. 

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Dr. Gabriela Hobbs: Why Is It Important for You to Empower MPN Patients?

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

What are some ways that can myeloproliferative neoplasm (MPN) care providers can help empower their patients? MPN expert Dr. Gabriela Hobbs from Dana-Farber/Harvard Cancer Center shares her perspective of how she educates her patients. Dr. Hobbs explains her methods of empowering all her patients in their care – whether they’re newly diagnosed, needing long-term MPN care, or going on to seek care from other clinicians.

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Transcript:

Gabriela Hobbs, MD: 

I think that empowering patients is really important in developing an excellent longitudinal relationship with an MPN patient. And the way that I like to empower my patients is through education. And that starts with the first meeting with the patient when they’re recently diagnosed, or maybe they’re seeking you out for another opinion because maybe something is going not well with their disease.

And so that first visit, I really like to spend a lot of time educating about what MPNs are, the different types, the things that we worry about, the possibility of disease progression, and then spending a lot of time talking about the different treatment options that exist. As well as spending a lot of time talking about how patients can maximize their quality of life with both pharmacologic interventions as well as lifestyle modification. And so education really is at the center of empowerment for patients.

And I think that that gives them a lot of control over their disease and prepares them for additional visits with me or with other clinicians if they’re seeking other care from other clinicians as well, especially those patients that maybe travel from far away. And so education during that visit is important, but also talking to patients about how to prepare for additional visits. So I talk to patients a lot about taking track of their symptoms, keeping track of how they’re feeling, how they feel with the medication, with perhaps a change in medication, how they feel like their symptoms are changing over time. Talking to them about the MPN symptom assessment form, and making sure that they can utilize that form to keep track of how they feel.

And then also asking questions…If they don’t ask questions during the encounter, make sure that they write down those questions in a notebook so that when they do go to see their clinician at the next appointment, they can make the most of that encounter by knowing that they’re going into that encounter, prepared with questions and able to summarize the way that they’ve been feeling over the last couple of weeks or months since their last appointment. So education is really always at the center of empowerment. 

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

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

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

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

 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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 How Do You Empower Patients?

 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. 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.

What Are Renal Medullary Carcinoma Noted Disparities?

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What Are Renal Medullary Carcinoma Noted Disparities? from Patient Empowerment Network on Vimeo.

What are the disparities seen in renal medullary carcinoma? Expert Dr. Nizar Tannir explains how grassroots movements are so important in rare diseases like renal medullary carcinoma and his hope for equitable policy change. 

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“My activation tip is work with your representatives in Congress with your local politicians and with different organizations to raise the decibel to try to make this happen and I hope it will happen in the near future.”

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Transcript:

Cora:

Dr. Tannir, what are the noted disparities seen in RMC and what are some of the actions being taken?

Dr. Tannir:  

RMC affects predominantly African Americans in this country. Unfortunately when you say African American and healthcare, in the same sentence, there it is, there is healthcare disparity. Healthcare disparity is a fact we live in, is something I face all the time in our citizens who are minorities, people of color in this country, whether they’re African American or Hispanic or other citizens.

Unfortunately, they don’t have the same healthcare access to like other patients, like other individuals. So that right there is a healthcare disparity. We need to remove those barriers and that’s the only way we’re going to address healthcare disparities, is by making it not disparity anymore. And how you do that, you give healthcare access, equal healthcare access to those individuals, because those individuals want to live, people want to live, people want to take care of themself, of their bodies, their health, they want to live longer, they want to be cured if they have cancer. But we have to provide them the access to the best, be it the treatments that are available right now even clinical trials, even clinical trials of drugs that may not be FDA-approved, they should have access to those as well, they’re equal citizens in this country.

They have to have access. The same way I have access, if I got cancer, I have access to clinical trials at MD Anderson. A patient with RMC should have that same equal healthcare access. I hope that this, it takes a village, as they say, it takes a village for all of us to work together, it’s not going to happen overnight this is going to be grassroots like you, Cora, are doing, grassroots movement from the ground up. Healthcare policies will change only when all the citizens in this country realize and believe that healthcare is a right, it’s not a privilege, it is a right, it is a right. The most important right is health, life high, this is important so the only way we can achieve that is when we believe as a country, as citizens of this country, that we’re all equal, God has created us equal. We have to have access to healthcare. My activation tip is work with your representatives in Congress with your local politicians and with different organizations to raise the decibel to try to make this happen, and I hope it will happen in the near future. 

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Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients

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Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) treatments are starting to expand, but where do things stand? Expert Dr. Nizar Tannir provides an update about current RMC treatment options and his perspective about RMC research and hope for emerging treatments.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…patients need to be well-informed and empowered, trust their physicians and work together to, on the road, to recovery and cure.”

Download Guide  |  Descargar Guía

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Advice for Newly Diagnosed Renal Medullary Carcinoma Patients

Transcript:

Cora:

Yes. How do you work with your RMC patients to make treatment decisions? What should RMC patients consider when deciding on treatments?

Dr. Tannir:

It’s always a partnership, Cora, this applies actually not just for RMC, not just between a physician, an oncologist like myself, and a patient with RMC. It is the partnership between every patient and every and their physician. They are treating oncologists, whether it’s RMC or any other kidney cancer type, or any cancer type, or any other health issue. It’s a partnership built on trust, built on knowledge and so the role of the physician is to explain to the patient their diagnosis, the prognosis, the treatment options, give them the facts. Patients need to be informed that’s why we have the informed consent when we offer a therapy. Informed consent is based on the physician or medical provider providing the information about the treatment, what benefits are, what potential complications or adverse events we call these. And the patient has to be aware of these things and they need to participate in their care.

And the decision-making is joint, it’s partnership. That’s the empowerment that we as physicians should give to our patients. They should be empowered in their care, empowered to know their disease, and they should know their disease very deeply. And only then that relationship is cemented through the trust, mutual trust, then the physician will offer the patient the treatment or treatments, there may be more than one treatment and it’s our role to go through these treatments and look at pros and cons. This treatment will offer you this, the treatment will offer you that. I think I can’t underscore more the importance of clinical trials. Clinical trials are important the treatment we are testing today may be experimental today, they may be the standard of care tomorrow.

So it’s important for individuals to see that participating in a clinical trial is not an experiment. Just we’re using subjects or human beings as guinea pigs it’s not, it is for their benefit because the results, the findings of the trials could directly or indirectly help those patients who participate in trials, but also help future patients. So participating in trials will not only help them, but help others after them. My activation tip is patients need to be well-informed and empowered, trust their physicians and work together to, on the road, to recovery and cure. 

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

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

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.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

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

 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. 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. 

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

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. 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.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

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

 How Do You Empower Patients?

 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. 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.