Tag Archive for: patient empowerment

Dr. Emily Hinchcliff: Why Is It Important for You to Empower Patients?

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

How can patients be empowered? Gynecological oncologist  Dr. Emily Hinchcliff from Northwestern Medicine shares the approaches she uses in her practice to help empower patients in their journey through care.

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Dr. Jung Gong: Why Is It Important for You to Empower Patients?

Charise Gleason: Why Is It Important for You to Empower Patients

Charise Gleason: Why Is It Important for You to Empower Patients?

Dr. Craig Cole: Why Is It Important for You to Empower Patients?

Dr. Craig Cole: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Emily Hinchcliff:  

So I empower my patients through education. I think that we as physicians, as providers, serve a really key role for patients in terms of serving as medical translators, in terms of helping our patients to ensure they understand the diagnoses that are facing them and their treatment options kind of for what the next steps in their care are.

So as a GYN oncologist, I really kind of weave that through my entire practice and every step of the way, I have the great privilege of caring for my patients from their diagnosis throughout their cancer journey. And so every step of the way, ensuring that they are educated about their disease and educated about their options, I think really allows us to build a powerful partnership and gives them the kind of ownership over their own cancer care.

Charise Gleason: Why Is It Important for You to Empower Patients?

Charise Gleason: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

How can patients and families be empowered? Advanced practice professional Charise Gleason from Winship Cancer Institute discusses her perspective and communication methods that have shown benefits for her myeloma patients.

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Related Resources:

Dr. Jung Gong: Why Is It Important for You to Empower Patients?

Beth Sandy: Why Is It Important for You to Empower Patients?

Dr. Craig Cole: Why Is It Important for You to Empower Patients?

Dr. Craig Cole: Why Is It Important for You to Empower Patients?

Transcript:

Charise Gleason:

I think it’s important to empower our patients, and we do that from day one. Patient comes to us, we’re starting to develop that relationship. And the discussions that we have early on can be very different from later, but we have to continually reinforce, ask questions, give patients the opportunity to ask us questions. I know when I talk to a patient about a clinical trial, and I’m documenting, I put that back in, patient or family member or care partner was given the opportunity to ask questions.

Our clinics go very quickly, and you have to make the time for your patients. So you have that relationship, and they know that they can bring issues to you. Sometimes we don’t get it right either, and you’ve got to own that and move on to that next step. So you continue that relationship. Patients are going through losing control with having a cancer, and like myeloma and many times patients never even heard of multiple myeloma until they come into our world.

So it is an ongoing open communication, and we don’t make decisions for them. We give them options and upfront or early relapse, you may have far more options than you do in that relapsed/refractory setting. But you’ve got to know what’s important to your patient and what their goals are. And, are they still working? Our patients vary in age. But you want to think about where your patient is, what’s important to them, and you don’t know that unless you ask the questions and have that communication. Our patients are very savvy. We go to meetings. The first thing they want to know is what did you learn? Even when they’re doing well on their current treatment, they want to know what’s next. What’s out there for me if this stops working?

 When we’re in that biochemical relapse phase where we don’t have to change treatment, we’re already having those conversations about what are those options next for you? And so I think that having that team approach, that open communication is really important for our patients and empowers them to make good decisions. As an advanced practice provider, it’s important for me to explain my role, right?

Patients will come to a practice, and sometimes they’re surprised that I don’t see the physician every time I come. So I think it’s instead of ignoring that and not telling patients, I think it’s important that we describe our roles in that care as well. That, yes, I also specialize in multiple myeloma. I collaborate with your physician. We talk about you, even if you’re not seeing your physician. And so I think that patient and family understanding the rest of the team and what we bring to the table for them is essential as well. 

Dr. Jun Gong: Why Is It Important for You to Empower Patients?

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

Why is it important to empower patients? Expert Dr. Jun Gong from Cedar-Sinai Medical Center shares his perspective on how empowering patients impacts them and specific ways he improves his gastric patient care.

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RuthAnn Gordon: Why Is It Important for You to Empower Patients?

Beth Sandy: Why Is It Important for You to Empower Patients?

Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Jun Gong: 

So empowering patients is very important because we can only do so much from our side in terms of we have treatments to offer, we have prescriptions to provide, we have diagnostics we can do to work up certain maladies and illnesses. However, I think what we don’t grasp is how much happens at home. The majority of the time is the patient at home with their caregiver, with their family members? And here, I think it’s a very important pillar of treatment where not only is one pillar just from the oncologist side and from the doctor’s and all the healthcare providers’ side, the other pillar is what happens at home.

And this is where I think empowering patients is very important. This is where empowering them to control what foods they eat, what foods have been known to be risk factors for stomach cancer or any kind of cancer.

What foods to focus on, to building nutrition, to be able to tolerate chemotherapy or cancer treatment, to be able to boost your immune system. These are important aspects that are controlled really at the patient level and the family level. The other way to empower patients is activity. We often say it that, mother knows best. If you don’t use it, you’re going to lose it. And so debilitation is a big problem in our cancer patients as well.

So ways to promote activity, whether it’s just a walk, a daily walk outside the neighborhood, or even to more strenuous types of cardiac exercises. And here we actually have newer resources available in our physical rehab colleagues. Our cancer nutritionists are excellent resources as well. And these are just aspects of empowering patients on what they can do at home. Because I often find patients and family members ask, what else could we be doing beyond what we are prescribing in the clinic and what we’re doing in the hospital or the medical care setting?

The other aspect is to empower patients to know that it is appropriate, always appropriate to seek more than another opinion on your treatment plan. And we have a really, really close relationship from both the academic to the community level where we’re more than happy to review clinical trials, provide second opinions. Here is a very important part that we recognize that we are not here to, let’s just say, have patients stay with us for treatment. We envision a relationship where if a trial is not available, our recommendations should be to deliver these recommendations to the community provider so that they can provide day-to-day care because their care is just as excellent and they have just the same access to standard of care. We are here for a mutual relationship and partnership. It is not a one-way street, and it’s not definitely a black hole where if you refer patients to a larger academic center, are you worried that you won’t hear from the patient or from the provider? We always make it a close goal to have timely feedback to our referring partners. And this is just some of the few ways that I believe it’s important to empower your patients.

Dr. Beth Faiman: Why Is It Important for You to Empower Patients?

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

How can patients be empowered, and why is it an important part of their care? Dr. Beth Faiman from Taussig Cancer Institute shares three key elements that comprise her view of patient empowerment.

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RuthAnn Gordon: Why Is It Important for You to Empower Patients?

Beth Sandy: Why Is It Important for You to Empower Patients?

Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Faiman:

I think as an advanced practice provider, I consider about three key elements of patient empowerment to include information, access, and engagement. So those three things really resonate with me through shared decision-making. So first of all, the patients need to possess the knowledge that they need to make informed decisions about their health? What is their health status remission? What are their future therapeutic options? Are there clinical trials available? And what’s the best treatment for them? 

And I share this information with the caregiver and the patient as well. Access is also an important role, and important thing for a patient, access to medications. Sometimes there’s co-pay assistance that we need to gain as nurses, advanced practice providers, and physicians to get patients what they need whether it’s a pill or a shot. And then finally, I did mention that shared decision-making process. And that’s where the patients are really engaged.

So I like to mutually share information between the patient caregiver and the clinical team, so we’re sharing information back and forth. We can identify what their goals of care are, and we can make decisions about their health that lessen the risk of decisional regret. Again, make them feel comfortable about the decisions they’re making. And so by these little strategies, I really thinking empowering the patients to take hold of their own health is a way that we can all mutually feel successful in their care.

RuthAnn Gordon: Why Is It Important for You to Empower Patients?

RuthAnn Gordon: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

How can patients be empowered, and why is it an important part of their care? Director of Clinical Trials Nursing RuthAnn Gordon from Memorial Sloan Kettering Cancer Center shares her expert perspective.

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Dr. Vinicius Ernani: Why Is It Important for You to Empower Patients?

Beth Sandy: Why Is It Important for You to Empower Patients?

Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Transcript:

RuthAnn Gordon:

Thank you for the question. I think one of the most important things we can do to empower our patients is to educate them. They really need to be prepared for what they can expect when they’re on their journey and also what their responsibilities are and what the clinician’s responsibilities are. What are going to be the expectations? And outlining that in a format that they’re comfortable with so considering what their literacy is, how they like to learn is important in those empowering conversations. Learning about the patient, building that relationship with them so you understand their learning styles, so you understand what they might need more direction on or more education on is  really important. 

And the reason why all of those things are important is because we want our patients to feel like they’re being heard. We want them to feel like no matter how big or small the question that they should ask it, that we are in a place to support them and help them and that we want to hear their questions. And we want to educate them. And we want them to feel like they have the best support that they need, the most appropriate support that they need in order to be educated and empowered and informed and a part of the process.

It’s important to make your patient a part of the process. It is we are in this, we are doing this. What do you need? What can I do to help? And really giving them that confidence. You understand what their needs are, and you want them to speak up and that it is safe to speak up, and that your questions will be heard here. I think that makes patients feel empowered, and it also gives them more self-confidence. And with confidence comes so many other healing things. And so I think it’s really important to help them with their processing with everything that’s going on is to empower them and educate them. And educating them will empower them.

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Dr. Kami Maddocks: Why Is It Important for You to Empower Patients?

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

What benefits can patients and care providers see from empowering patients? Expert Dr. Kami Maddocks from The Ohio State University Comprehensive Cancer Center explains benefits that she’s seen in her patients and ways that she helps encourage deepening of their knowledge and capacity for informed treatment decisions.

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Dr. Vinicius Ernani: Why Is It Important for You to Empower Patients?

Beth Sandy: Why Is It Important for You to Empower Patients?

Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Kami Maddocks

I think empowering patients is so critical, because I think when they understand their disease better, the treatment options, or why they’re not receiving treatment and kind of what their journey could look like, that they overall do much better. I think when a patient comes in, I like to give them my explanation of their disease, make sure that I am answering all of their questions, information. Some patients have read a lot before they come in and some have not read a lot. I like to provide them with websites or areas of information that I know is accurate and up-to-date information and encourage them once they read that to give us a call.

We also provide them some written information and I have a 24-hour line. And I always encourage patients, I don’t know whether you’re getting treatment and having a side effect, whether you’re at home worrying about a symptom, whether you have a question about what’s going on, I don’t know that you’re worried unless you let me know.

So I like to encourage patients, if you have questions, concerns, please reach out. We also have a portal where patients can ask non-urgent questions if they’d rather have it in writing, but I think making sure that they know we’re here to help them. I think offering information on clinical trials, I encourage patients if they have questions or concerns on the information they’re provided that they think about second opinions.

And patients that I see for second opinions I like them to know that you’re getting great treatment locally or this treatment is something that you don’t have to drive here for if you need treatment. But I’m always available if there’s other concerns or something doesn’t seem right. So I think making sure that patients’ questions are answered. I think making sure that they are comfortable getting other opinions if they need to and making sure that they know that if they have concerns they should reach out and not worry or use Google but use us to help them.

Dr. Rafael Santana-Davila: Why Is It Important for You to Empower Patients?

Dr. Rafael Santana-Davila: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

What are some ways for cancer patients to be empowered by experts? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares his perspective and benefits of patient empowerment.

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Dr. Vinicius Ernani: Why Is It Important for You to Empower Patients?

Beth Sandy: Why Is It Important for You to Empower Patients?

Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Rafael Santana-Davila: 

An empowered patient is a patient that does better, because they know what’s going on. They have a better understanding of the disease. They’re better engaged. So how do you empower your patients? It’s a very difficult question to answer, because I don’t think that there’s a recipe to do this. And every patient is different. But what I try to do is to educate patients and know that these are hard conversations that a lot of it is going to be over their head. So you have to do a lot of re-education. And when I say over their heads, I’m not meaning that they are not smart enough to get it, it’s just they’re going through a lot. So you have to be simple with them. You have to meet them where they are and just do a lot of re-education and talking about the things that you think you’ve talked about, but many times they were thinking about something else, and they didn’t get it.

Beth Sandy: Why Is It Important for You to Empower Patients?

Beth Sandy: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

How can patients be empowered by cancer care providers? Expert Beth Sandy from Abramson Cancer Center shares her perspective and actions she takes to help activate patients in their care.

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Dr. Vinicius Ernani: Why Is It Important for You to Empower Patients?

Dr. Rafael Santana-Davila: Why Is It Important for You to Empower Patients?

Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Transcript:

Beth Sandy:

I think the best way for me to empower my patients is to be optimistic and to give them hope and because I’ve seen a lot of good stories. I also think one of the best ways to empower patients is to get to know them and who they are as a person and what is important to them, because then we can tailor our treatments and our discussions to what is important to them. I think another way to empower patients is to give them time to ask questions and frequently I’ll say, “Do you have any other questions?” I always ask that before we leave the room. “Do you have any other questions for me? Do you understand everything that we’ve said?”

Another way is to make sure they know how to get in touch with me. So I personally really like the online portal. So patients can send us messages through the portal, but they can certainly call as well. But make sure they know how to get in touch with you, because that’s something that can be really scary when you’re at home and you’re worried about something, and you don’t know how to get in touch with your care team.

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

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. 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?

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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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

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?’”

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

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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?

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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Nurse Natasha Johnson: Why Is It Important for You to Empower MPN Patients?

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

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?

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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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?

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.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

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.