patient empowerment Archives

Dr. Jennifer Ligibel: Why Is It Important for You to Empower Patients?

October 29, 2024/in EPEP, EPEP Programs, EPEP Videos /by Kara Rayburn

Why is it important to empower patients? Expert Dr. Jennifer Ligibel from Harvard Medical School and Dana-Farber Cancer Institute shares her perspective on how her career course in oncology has impacted evidence-based tips that she provides to empower her patients.

Related Resources:

Joelys Gonzalez: Why Is It Important for You to Empower Patients?

Nicole Normandin: Why Is It Important for You to Empower Patients?

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Jennifer Ligibel:

This is such a great question. And honestly a question that really set my career course in focusing on supportive care for patients with cancer. Many years ago when I first started working in oncology, my patients would often ask me, after months of chemotherapy and radiation and surgery, “Dr. Ligibel, what can I do to help myself feel better, live longer?” And there wasn’t much to tell them at that point. And that’s really why I’ve spent the last 20 years doing research and figuring out what kind of treatment modalities can people do themselves to help themselves feel better, whether it’s exercise or weight management, or changing their diets.

I think for me, talking to patients, hearing about what their concerns are, offering hope, and really sticking now to what are evidence-based practices, to tell people that yes, you can exercise, you can eat healthfully, and those things will make a difference. They’ll help you feel better, they’ll help reduce the side effects you’re having from therapy. And although we’re still studying it, these behaviors are linked to better long-term outcomes. So for me, empowering people is about listening to them and providing them with evidence-based things that they can do to help themselves feel better.

Expert Perspective | The Value of Empowering AML Patients and Care Partners

October 22, 2024/in Acute Myeloid Leukemia, AML Access and Affordability, AML Elevate, AML Elevate Advocacy, AML Programs, AML Video AA /by Kara Rayburn

How can patients with AML and their care partners feel empowered? Dr. Eric Winer, an AML expert, discusses the crucial role of the healthcare team and emphasizes the importance of open communication, asking questions, and understanding the care plan.

Dr. Eric S. Winer is Assistant Professor of Medicine at Harvard Medical School and Clinical Director of Adult Leukemia at Dana-Farber Cancer Institute. Learn more about Dr. Winer.

Download Resource Guide

See More from ELEVATE AML

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Transcript:

Katherine Banwell:

As a provider, Dr. Winer, how do you empower care partners and patients who have been diagnosed with AML?

Dr. Eric Winer:

From a provider standpoint, one of the most important things we need to do is listen and try to understand, first of all, what the patient is going through, and what the patient needs. Like I said, that’s where this is a team approach. It’s a team approach from not just a standpoint of patient and caregiver, patient and physician, patient and nurse practitioner or physician’s assistant, patient and social worker.

This is a traumatic experience, and there are things that we can try to do to make it less traumatic, but one of the best ways to make it less traumatic is making sure patients are informed, that patients understand plans, that patients understand what’s going to be happening. One of the biggest concerns with any of these diseases is the unknown. There is a certain amount of unknown that I can’t predict.

I can’t say to somebody you will or will not respond, but what I can say is, listen, here is what we’re going to be doing over these next few weeks, and here is our short-term plan, and here is our long-term plan, and making sure that we’re all on the same roadmap.

I think that’s really important in terms of empowering the patients. The other thing that is important is that the patients should feel comfortable asking questions, because we’re not expecting our patients to be experts in leukemia. We’re expecting our patients to be the patients. I think of us, in terms of the clinicians, as being sherpas. We’re guiding people through this process, but the reality is they’re doing all the work. We’re just the guides, and so it’s important as guides that we make sure all these questions are answered, all of the information is given to the patient, and that the patient asks for that information.

The other thing that is important, that is a little overlooked, is taking care of the caregivers as well. It’s very difficult to be a patient, but it’s also difficult to take care of a loved one or a friend during this time. So, it’s important that the caregivers have an adequate understanding as well about what’s going on, and what we expect to be coming forward in the next days and weeks so that they can plan for these processes as well.

Nicole Normandin: Why Is It Important for You to Empower Patients?

October 17, 2024/in EPEP, EPEP Programs, EPEP Videos /by Kara Rayburn

Why is it important to empower patients? PEN Communication Director Nicole Normandin Rueda, LMSW discusses her approach to patient empowerment and support along with her passion as a social worker in patient care.

Related Resources:

Joelys Gonzalez: Why Is It Important for You to Empower Patients?

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?

Transcript:

Nicole Normandin:

I feel as though the job of a social worker is to fill the gaps as much as possible. Usually that means I am providing information and resources that maybe, is a new resource or nobody’s really talked to this patient about the availability before. Sometimes that means I am anticipating potential issues, and I’m trying to be on top of it. A good example of that is if I know there’s a patient that is really self-conscious about losing their hair, for example, asking their care partner, hey, you might want to get a lint roller. And, if you notice that there’s, hair falling, you can use that to pick it before it causes more stress or before it makes the patient have a little bit of a freakout because of the amount of hair that’s left behind. But at the end of the day, what I’m trying to do and what I always want to do is give patients and their families the feeling of community. I want them to know at the end of the day, you are not alone.

The day you get diagnosed, it changes your life, and it changes all of your family’s life forever, regardless of what the outcome is. And so I want to be as much of a resource to patients and their families as I can. And the best way that I can do that is, forming relationships, asking questions, being there whenever they need, or maybe when they don’t need me, right? Sometimes I just, hey, how are you? And those are usually the times that I get more information out of them, as opposed to when it’s like a required visit or call. Just letting patients know that I’m here, and I’m doing this because I want to.

And it’s not that it’s a job, it’s because it’s a passion. Sharing evidence-based resources, organizations like Patient Empowerment Network, there are so many resources that patients, they’re so grateful to know or hear from somebody that is just able to give them just a couple tools in their tool belt that maybe they forgot about, or they didn’t even know that this resource was available. I do this because I want to be able to provide as many resources, as much of a relief to patients and their families as I possibly can. And at the end of the day, it’s why I do what I do.It’s why I’m a social worker. It’s why I continue to work with cancer patients and their families. And I will continue doing that for the foreseeable future.

Joelys Gonzalez: Why Is It Important for You to Empower Patients?

October 17, 2024/in EPEP, EPEP Programs, EPEP Videos /by Kara Rayburn

Why is it important to empower patients? PEN Program Manager Joelys Gonzalez discusses her methods for empowering patients, holistic approach to care, and the impact of patient empowerment on health outcomes.

Related Resources:

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?

Transcript:

Joelys Gonzalez:

Empowering patients is central to my work as a social worker. For me, this means providing patients with the knowledge, the tools, the confidence they need to actively participate in their own care and actually advocate for the best healthcare that they can possibly obtain. And this could be by educating them about their diagnosis, treatment options, or what to expect during and after treatment. This can help reduce the fear and anxiety, allowing them to make informed decisions.

I also focus on promoting self-advocacy, encouraging the patients to communicate their needs and their preference, not to stay quiet, and just make sure that their words are being heard, to make sure that they are having the best access to the resources as well that can support them during their overall health. And I believe that this holistic approach in addressing not just the physical, but also the emotional, social, and psychological aspect of care ensures that patients are not just surviving cancer, but they are thriving. Empowering patients is super important to me, because it just restores that sense of control of what can be a super overwhelming situation.

Being able to have that control from day one, it’s super important, because it makes you part of your own treatment, of your own cancer journey. And from day one, cancer can take away a lot of it. But by empowering patients, we can help them regain their autonomy and their dignity. Empowered patients are often more engaged in their care, which leads to better outcomes and to lead to better communication with their healthcare team. And ultimately, the goal about this is to help patients feel supported, informed, and confident as they are navigating their journey, knowing that they are actively participating in their own care and making sure that they are engaged in the shared decision-making with their healthcare team is super important.

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?

October 17, 2024/in EPEP, EPEP Programs, EPEP Videos /by Kara Rayburn

Why is it important to empower patients? Expert Dr. Cynthia Thomson from the University of Arizona discusses her approach to patient empowerment, how patient goals can vary, and her perspective on supporting patient lifestyle changes.

Related Resources:

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Kimberly Smith: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Cynthia Thomson:

Cancer patients are amazing individuals. They really are committed to their health and well-being, and they’re also committed to the health and well-being of so many around them. So I empower patients by really helping them to think internally about what it is they want to accomplish in terms of lifestyle, what it is that really is important to them. Is it getting down on the floor and playing with their grandchild? Is it being able to have regular bowel movements every day? Is it to handle all these symptoms, maybe long-term fatigue or whatever, and really try to meet them where they are so that they really can achieve the goals that are important to them, not what’s important to me.

And I think that as I’ve worked with patients over decades, what I realize is that when you start where they are and support the patient along the way, they will make positive change. A lot of people will say, oh, no one will change their diet.

People aren’t ever going to eat healthy. Why do you worry about that? And I say, well you know, if that were the case, I think I would have quit doing this a long time ago. I would have realized that. But the opposite is true. People are looking for support, for information, for that opportunity to empower themselves to be healthier. They want to be healthier. It’s just that sometimes they need some help along the way to figure out what it is they need to achieve that goal.

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

October 9, 2024/in EPEP, EPEP Programs, EPEP Videos /by Kara Rayburn

Why is it important to empower patients? Expert Dr. Brad Kahl from Alvin J. Siteman Cancer Center discusses his methods and reasoning for empowering patients and how he prepares patients to participate in shared decision-making.

Related Resources:

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?

Dr. Michael Grunwald: Why Is It Important for You to Empower Patients?

Kimberly Smith: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Brad Kahl:

I empower my patients by giving them information. I really try to educate them about the disease. Some of the approaches in follicular lymphoma are counterintuitive, and it’s impossible for a patient or a family to understand why we’re doing what we’re doing if they don’t have a good understanding of the disease itself. Same with the treatment options. We have to talk through the treatment options. Pros, everything has pros and cons.

And so I really try hard to educate the patient and the more educated they can become, the more they can participate in shared decision-making. In follicular lymphoma there’s often a lot of choices to make good choices. And the more the patient is educated and they understand, the more they can participate in the shared decision-making. And that’s the way I like to operate whenever possible.

Collaborate | What You Should Know About CLL Clinical Trials

October 2, 2024/in Chronic Lymphocytic Leukemia, CLL Collaborate, CLL Collaborate Videos, CLL Newly Diagnosed, CLL Programs, CLL Treatments and Clinical Trials, CLL Videos ND, CLL Videos TC /by Kara Rayburn

What role do clinical trials play in treating chronic lymphocytic leukemia (CLL)? This animated video explains clinical trials, reviews the benefits of patient participation, and discusses questions to ask your healthcare team.

Download Resource Guide

See More from COLLABORATE CLL

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Transcript:

Dr. Johnson:

Hello everyone! I’m Dr. Johnson, a physician specializing in blood cancers. Welcome back to the CLL Collaborate series from the Patient Empowerment Network.

Joseph:

And I’m Joseph, Dr. Johnson’s patient. Today, we’ll be discussing an important topic: CLL clinical trials. We will talk about what clinical trials are, their role in advancing research, and how patients may benefit from participation.

Dr. Johnson:

Let’s get started. Clinical trials are research studies that involve patients, and the goal is to find better ways to prevent, diagnose, or treat diseases. They are essential for advancing medical knowledge and for bringing new treatments to patients.

Joseph:

Thanks, Dr. Johnson. And how exactly do clinical trials move research forward?

Dr. Johnson:

Good question! Clinical trials provide critical data on the safety and effectiveness of new treatments. They also help researchers understand how different therapies work in diverse groups of people and ensure treatments work well and do not cause harm to humans before they become widely available.

Early phase clinical trials are used to determine the treatment’s safety, while the latter phases investigate how effective the therapy is in managing a specific condition.

Joseph:

And how can CLL patients benefit from participating in clinical trials?

Dr. Johnson:

Well, Joseph, participating in a clinical trial can provide access to new options that are not yet available to the public. Patients also receive high-quality care from the clinical trial healthcare team, as they are very closely monitored throughout the study. And participation contributes to the advancement of medical research, potentially benefiting future patients.

Joseph:

That makes sense. When we reviewed my treatment options, you suggested several trials that could be a good fit for me, and we discussed the pros and cons. So, what should patients ask their team before joining a clinical trial?

Dr. Johnson:

Let’s walk through several important questions to ask your healthcare team:

What trials do you recommend for me and why?
What is the purpose of the trial?
What treatments and tests will I receive during the trial?
What are the potential risks and benefits?
Are there resources to help me learn more about the trial?
How might this trial affect my daily life?
Will I need to travel for treatment or tests?
Finally, how long will the trial last, and what happens after it ends?

Discuss these questions with your healthcare team to determine if a clinical trial is the right option for you.

I also want to note that clinical trials are voluntary, and patients can decide to leave a trial at any time. The informed consent process educates participants about all potential risks and benefits and reviews their rights. Remember, you are at the center of your care.

Joseph, can you share advice for patients as they learn more about trials and advocate for better care?

Joseph:

I’d be happy to! Here are some additional steps to help you feel confident when considering clinical trials:

First, educate yourself: Understand the basics of clinical trials and how they work. It’s important to gather your information using credible resources—like the Patient Empowerment Network and The Leukemia & Lymphoma Society.
Next, write down questions: Prepare a list of questions to ask your healthcare team. And download the guide that accompanies this video to review the questions Dr. Johnson suggested.
Additionally, discuss goals: Be clear about your treatment goals and ensure you’ve had all of your questions answered before making a decision.
Bring support: Have a loved one join you for appointments or discussions to help take notes and to provide support.
Finally, stay informed: Keep up with the latest research and advancements in CLL treatments. As I mentioned, PEN and the LLS are great sources of information.

Dr. Johnson:

These are excellent tips, Joseph! Thank you everyone for joining us. For more information and valuable resources, visit powerfulpatients.org/CLL.

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?

October 2, 2024/in EPEP, EPEP Programs, EPEP Videos, MPN Programs, Myeloproliferative Neoplasms /by Kara Rayburn

Why is it important to empower patients? Expert Dr. Akriti Jain from Cleveland Clinic discusses her methods of educating and empowering her patients and how empowerment sets patients on their path to optimal cancer care.

See More from EPEP MPNs

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MPN Care Barriers | Gaps in Patient-Centered Care

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

Kimberly Smith: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Akriti Jain:

Empowering my patients is very important to me because I want to make sure when a patient leaves my clinic appointment they have a basic understanding of the disease that we’re fighting together. I try to explain to them basic understanding of how a bone marrow functions, where it is present, it’s in their long bones, and then draw them a chicken scratch of what MDS is and what MPN is, what a myeloproliferative neoplasm actually entails, how it is diagnosed, print them out their bone marrow biopsy reports so that they understand where the pathologist is seeing the issues.

And this is, again, very important because if a patient understands what they’re fighting, what we’re fighting together, they’re more likely to pay attention, they’re more likely to be more compliant, they’re more likely to adhere to what you recommend, get those lab tests, come to their visits, take the medications, and call you if they have concerns or questions.

Kimberly Smith: Why Is It Important for You to Empower Patients?

October 2, 2024/in EPEP, EPEP Programs, EPEP Videos, MPN Programs, Myeloproliferative Neoplasms /by Kara Rayburn

Why is it important to empower patients? Hematology-oncology nurse practitioner Kimberly Smith from Duke Health shares her approach to moving patients from a place of helplessness to becoming key players in powerful decisions.

See More from EPEP MPNs

Related Resources:

MPN Care Barriers | Gaps in Patient-Centered Care

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?

Transcript:

Kimberly Smith:

I empower my patients by giving them information, education. I try to educate each one of my patients, their family members. It’s very important to me, because I’ve been on that side. And I know how it is to be sitting there and not understanding anything that’s going on and not knowing where do I go from here, how is this treated, how is this person going to be managed, what can I do to help, and feeling helpless.

I want my patients and their families to always feel powerful. I want them to always feel like they are part of this team. Nobody’s just making decisions for them. They have a voice, and it is our job to advocate for them and help them strengthen their voice. That’s why it’s important to me.