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

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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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 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?

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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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 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.

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

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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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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?

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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. 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?

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

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

Why is it vital for small cell lung cancer patients  to be empowered by cancer experts? Expert Dr. Vinicius Ernani from the Mayo Clinic discusses the power of giving patients hope and the importance of clinical trials.

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

Transcript:

Dr. Vinicius Ernani:

So I think it’s always important to give the patient hope. It doesn’t matter how aggressive the disease is. I think the patients, they need to have hope to go home and continue moving with their lives. So again, small cell, it’s an aggressive disease, yes, but it responds very well to treatment. And now, we know that immunotherapy is there, it improves survival. We know that about 10 percent, 12 percent of the…50 percent of the patients are alive at one year after they start treatment. If you look at two years, there’s about 20 percent of the patients are alive. And if we look at five years, there’s about 10 percent of the patients that are alive with small cell. So we are seeing some progress with immunotherapy.

And again, I encourage, this is a disease that responds very quickly. It’s going to make you feel better very soon. I think that any patient with extensive stage small cell lung cancer deserves to be treated. And again, there’s more clinical trials coming with the immunotherapy, with the antibody drug conjugates. So hopefully, we’re going to continue to move the needle in small cell lung cancer.

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

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

What are some ways that cancer patients can be empowered by healthcare providers? Expert Dr. Isaac Powell from Karmanos Cancer Institute shares his perspective on ways patients can take charge of their health and situations that may be outside their control.

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Transcript:

Dr. Isaac Powell:

I tell my patients that they have to take charge of their health. They have to talk to the doctor. You have to ask the doctor challenging questions. Then you have to do things that are going to help you as well. You have to be responsible for your own health, such as losing weight if necessary, such as exercising if necessary.

There are things that can cause things that you can’t control, like the pollution of the air and the water. But even in those situations, you need to challenge that and say, we need to do something about this polluted area where I’m living. And so those are the kinds of things that I discuss with my patients. Take charge of your health in every aspect.

Dr. Ronald Chen: Why Is It Important for You to Empower Patients?

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

 Empowering patients and care partners is key to helping them to make informed care decisions.  How can experts provide the right information about various options based on what matters most to the patient? Prostate cancer expert Dr. Ronald Chen with the University of Kansas Medical Center shares his approach to empowering patients so they can make the individual decision for them and their family.

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Transcript:

Dr. Ronald Chen:  

I empower my patients by giving them the necessary information, so that patients and their caregivers are empowered to make the best decision for them. I think for every cancer patient, there’s always a balance that’s struck between how aggressive the treatment should be, and also how important quality of life is to them. And every patient may make a different decision among the different options that are available.

So as a physician, giving patients the right information about the different options and about the implications in terms of side effects and quality of life and survival is so important, so that each patient is empowered to make the individual decision for them and their family.

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

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

How can cancer experts help empower patients? Expert Dr. Danielle Brander from Duke Cancer Institute shares her approach to patient care through diagnosis and treatment and explains how patient empowerment helps in creating optimal care.

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Transcript: 

Dr. Danielle Brander:

My hope or my goal from my first meeting together, and that could be around the time of their diagnosis. Sometimes we’re meeting because patients are referred to talk about treatment. Sometimes patients have had a few treatments, of course, if they’re being referred for a clinical trial or a novel course of therapy. And my hope from the very beginning is creating an environment or creating a conversation and relationship where first and foremost patients feel free and not hesitant to ask their questions. Because if there’s misunderstanding or a lack of understanding or patients don’t know what to look out for, then it’s really hard to really to help them, whether that’s treatment or empowering them on other aspects of their health. And sometimes those questions come up with the visits, sometimes they come up after.

I encourage them to bring them back for their follow-up visits. It’s okay to ask the same questions because they’re going to be at different paths and points in their CLL journey along the way. It’s important for them to be empowered because again, that helps us in tailoring their treatment. It helps us at understanding what they want, what their goals are in choosing a treatment or choosing a trial path.

And again, only the patient and their family or caregivers truly know what is best for them and for us to meet them where they are. But the other empowering things I tell patients is that, you know, when they ask their questions or when they bring forth their experience, it improves our understanding to help them. But it’s really through those conversations that we learn so much to help all our patients, to be quite honest. We hope through trials that gives us information, but we know trials can’t capture all of this. It’s these individual relationships. And so I tell patients that them sharing their experience really does help us tailor things for them. But really, I think, enriches the experience and the way that we can help everyone.

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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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.

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

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Nurse Natasha Johnson: Why Is It Important for You to Empower MPN Patients? from Patient Empowerment Network on Vimeo.

What are some ways that myeloproliferative neoplasm (MPN) oncology nurses and other MPN care team members can aid in empowering patients? Oncology nurse practitioner Natasha Johnson from Moffitt Cancer Center how she helps patients and their loved ones become more involved in care and treatment decisions.

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Transcript:

Natasha Johnson:

So I’m an encourager, so I will encourage patients to be involved, get their loved ones involved, educate themself on the disease on the common symptoms, on treatments, and then ways to alleviate those symptoms. So I would encourage them too, to keep on living. Let’s do what we can to improve the symptom burden so you can keep on living. And I think this is important, because I believe that empowered patients are very well-informed, and they are the top key player in their care. They’ll share their goals of care, which makes them better prepared to work with the healthcare team to create an individualized plan of treatment for them.

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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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?

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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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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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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.