AbbVie’s CLL Emotional Impact Report Panel

All patients living with cancer, no matter their background, deserve to feel supported as they navigate their diagnosis. PEN’s VP of Programs, Aïcha Diallo, and panelists at AbbVie’s Emotional Impact Report event, touch on the resources available to help patients with chronic lymphocytic leukemia (CLL) feel empowered.
Check out the full panel: https://bit.ly/4joCiJN

Dr. Shaakir Hasan: Why Is It Important for You to Empower Patients?

 What impact can patient education have on healthcare outcomes? Dr. Shaakir Hasan from Beth Israel Lahey Health shares his methodology of treating patients like first-year medical students, explaining conditions from pathophysiology to prognosis, and reveals how this educational approach builds trust, comfort, and engagement.

 

 

Related Resources:

Aïcha Diallo: Why Is It Important for You to Empower Patients?

Aïcha Diallo: Why Is It Important for You to Empower Patients?

Shannon MacLaughlan: Why Is It Important for You to Empower Patients?

Shannon MacLaughlan: Why Is It Important for You to Empower Patients?

Dr. Abigail Zamorano: Why Is It Important for You to Empower Patients?
Dr. Abigail Zamorano: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Shaakir Hasan:

Education, I cannot stress that enough. Whenever a patient walks in, I treat them as if they’re like a first year medical student, basically. And I’ll say, you know, what do you understand of your condition? Do you want to go over it? And I just kind of from the pathophysiology to the current condition to treatment options, to what to look forward to as far as far as prognosis, et cetera, I was very surprised to find how engaged patients would be in learning about that.

Now not every single patient really wants to know everything, wants to be treated like a student, but I was surprised that the proportion of patients that are truly engaged, that truly do want to learn and as a result of it, become empowered and a lot more comfortable with whatever decision they make a lot more comfortable with me, being around me, just knowing that they have a lot more trust in me because I took the time for them to understand what’s going on. And so that’s definitely how I would empower my patients.

Dr. Abigail Zamorano: Why Is It Important for You to Empower Patients?

Why is it important to empower patients? Expert Dr. Abigail Zamorano from McGovern Medical School (UTHealth) discusses her goals for her patients and ways that she empower her patients in their care. 

Related Resources:

Aïcha Diallo: Why Is It Important for You to Empower Patients?

Aïcha Diallo: Why Is It Important for You to Empower Patients?

Shannon MacLaughlan: Why Is It Important for You to Empower Patients?

Shannon MacLaughlan: Why Is It Important for You to Empower Patients?

Dr. Shaakir Hasan: Why Is It Important for You to Empower Patients?

Dr. Shaakir Hasan: Why Is It Important for You to Empower Patients?


Transcript:

Dr. Abigail Zamorano:

I empower my patients with information. I want patients to leave their appointment with me feeling as knowledgeable as possible about their disease diagnosis and their treatment plan. I want them to also feel comfortable in asking me lots of questions. There are no bad questions or silly questions. I want patients to really feel like they have as much of a handle on this process as possible. Cancer is a really scary thing for anyone to go through.

And I tell my patients this is potentially their first time going through a cancer diagnosis and treatment, but it’s not my first time. It’s not my first rodeo. I want to guide them through this process. It’s my job to guide them through this process. So I want patients to feel empowered by the information that they receive from me. I also want patients to be able to ask questions of their friends and their family. I want their friends and family to ask me their questions. I want them to look things up online. I know online can sometimes be a scary place full of misinformation, but there’s also a lot of really good information.

So I direct my patients to specific areas such as the American Cancer Society or The Foundation for Women’s Cancer, that have really great patient- and provider-centered resources to help a patient navigate this journey. I also want patients to think about what barriers might come up in their treatment plan or if it was an unanticipated barrier, talk to me about barriers as they come up.

Cancer therapy is only as good as what we’re able to deliver. And so I want the patient to have the best possible opportunity at treating their disease. And that really depends on their ability to access their care. And I want them to come to me if there are any issues in accessing their care, and I want to be able to help them through this process.

Leveling the Playing Field for Multiple Myeloma Patients in Community Care Settings

A panel of experts explore ways to ensure multiple myeloma patients in community care settings receive equitable access to treatment and care.

The panel includes:

  • Dana Dornsife – Founder, Lazarex Cancer Foundation
  • Jenny Ahlstrom – Founder and Chief Executive Officer, Healthtree Foundation
  • Diane Moran – Business Relationship Management, International Myeloma Foundation
  • Pamela Price – Deputy Director, Balm in Gilead
  • Ola Banjo – Community Engagements & Partnerships Director, Multiple Myeloma Research Foundation
  • Christopher Peña – Educational Programs Director, Multiple Myeloma Research Foundation
  • Sally Werner, RN, BSN, MSHA – Chief Executive Officer, Cancer Support Community
  • Aïcha Diallo, MPH, CHES – Vice President of Programs, Patient Empowerment Network

Brought to you by the Multiple Myeloma Collective, Sponsored by Bristol Myers Squibb

CELMoDs Tomorrow

A panel of experts explore the potential of next-generation #myeloma treatments, focusing on Cereblon E3 ligase modulators (CELMoDs) and the critical need for equitable patient access.

The panel includes:

  • Dana Dornsife – Founder, Lazarex Cancer Foundation
  • Jenny Ahlstrom – Founder and Chief Executive Officer, Healthtree Foundation
  • Diane Moran – Business Relationship Management, International Myeloma Foundation
  • Aïcha Diallo, MPH, CHES – Vice President of Programs, Patient Empowerment Network
  • Christopher Peña – Director, Educational Programs, Multiple Myeloma Research Foundation
  • Pamela Price – Deputy Director, Balm in Gilead

Brought to you by the Multiple Myeloma Collective, Sponsored by Bristol Myers Squibb

Immunomodulators (IMDs) Today

A panel of experts discuss the bedrock therapy in multiple myeloma immunomodulators (IMDs).

The panel includes:

  • Jenny Ahlstrom – Founder and Chief Executive Officer, Healthtree Foundation
  • Diane Moran – Business Relationship Management, International Myeloma Foundation
  • Pamela Price – Deputy Director, Balm in Gilead
  • Christopher Peña – Director, Educational Programs, Multiple Myeloma Research Foundation

Brought to you by the Multiple Myeloma Collective, Sponsored by Bristol Myers Squibb

Tailored Multiple Myeloma Care

A panel of experts discuss strategies for how to best support multiple myeloma patients and their families during treatment.

The panel includes:

  • Diane Moran – Business Relationship Management, International Myeloma Foundation
  • Jenny Ahlstrom – Founder and Chief Executive Officer, Healthtree Foundation
  • Dana Dornsife – Founder, Lazarex Cancer Foundation
  • Aïcha Diallo, MPH, CHES – Vice President of Programs, Patient Empowerment Network
  • Ola Banjo – Director, Community Engagements & Partnerships, Multiple Myeloma Research Foundation
  • Sally Werner, RN, BSN, MSHA – Chief Executive Officer, Cancer Support Community
  • Pamela Price – Deputy Director, Balm in Gilead

Brought to you by the Multiple Myeloma Collective, Sponsored by Bristol Myers Squibb

Breaking Barriers: Improving Multiple Myeloma Care Access

 

Aïcha Diallo, Vice President of Programs at the Patient Empowerment Network, explores the challenges multiple myeloma patients encounter when accessing care. She also shares effective strategies to help overcome these barriers.


Brought to you by the Multiple Myeloma Collective, Sponsored by Bristol Myers Squibb

Multiple Myeloma Community Barriers

A panel of experts discuss the barriers multiple myeloma patients face when receiving care in community-based settings.

The panel includes:

  • Jenny Ahlstrom – Founder and Chief Executive Officer, Healthtree Foundation
  • Diane Moran – Business Relationship Management, International Myeloma Foundation
  • Sally Werner, RN, BSN, MSHA – Chief Executive Officer, Cancer Support Community
  • Pamela Price – Deputy Director, Balm in Gilead
  • Ola Banjo – Director, Community Engagements & Partnerships, Multiple Myeloma Research Foundation
  • Aïcha Diallo, MPH, CHES – Vice President of Programs, Patient Empowerment Network
  • Christopher Peña – Director, Educational Programs, Multiple Myeloma Research Foundation
  • Dana Dornsife – Founder, Lazarex Cancer Foundation

Brought to you by the Multiple Myeloma Collective, Sponsored by Bristol Myers Squibb

Unveiling the Layers: Supporting Underrepresented CLL Patients Through Empathy and Cultural Humility

In this insightful video, PEN’s own Aïcha Diallo discusses the unique emotional challenges faced by patients from underrepresented communities with Chronic Lymphocytic Leukemia (CLL). She emphasizes the importance of understanding patients’ cultural backgrounds, listening to their specific needs, and providing tailored support. Aicha introduces the concept of “cultural humility,” highlighting how healthcare teams can better support these patients by being better listeners, removing biases, and fostering environments where patients feel heard and valued. This video delves into strategies like peer support, one-on-one interactions, and providing accessible resources, all aimed at meeting patients where they are in their journey.

Key Points:

  • Understanding the unique challenges and cultural nuances of underrepresented CLL patients.
  • The significance of cultural humility in healthcare.
  • Strategies for emotional and practical support tailored to individual patient needs.

Shannon MacLaughlan: Why Is It Important for You to Empower Patients?

Why is it important to empower patients? Expert Dr. Shannon MacLaughlan from University of Illinois discusses her approach to patient care, advocacy, and empowering them in their cancer care.

 

Related Resources:

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

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

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

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


Transcript:

Shannon MacLaughlan:

I empower patients, hopefully by listening to them. I spend more of my time listening to them and learning about them than I do telling them what to do. I spend a lot of time getting to know who in their life is important in helping them make decisions and helping them lay out their goals for care and for life. I think that’s the most important thing I can do to empower someone during their treatment journey. I will often try to empower and elevate the voices of my patients even further by having them participate in the work that I do in a variety of different ways.

I have patient advocates who participate in study design. I have survivors from my practice who have made public appearances with me. We’ve done radio shows together during cervical cancer awareness month. We have involved them in higher level advocacy work. As an example, I sit on the Illinois Special Commission for Gynecologic Cancers and the chair of our Research and Policy Subcommittee.

And my co-chair on that subcommittee is a survivor herself who I’ve known since the day she was diagnosed and she went on to finish a master’s in public health and is in nurse practitioner school now. She and I work together in identifying the best ways to provide some justice and equity in cervical cancer care and outcomes. So I try to empower everyone during their cancer journey, but I also try to elevate voices with my own platforms.

Aïcha Diallo: Why Is It Important for You to Empower Patients?

 Why is it important to empower patients? Aïcha Diallo, MPH, CHES discusses her approach to patient empowerment, the benefits of engaging patients, and the importance of including care partners in informative conversations.

 

Related Resources:

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

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

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

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

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


Transcript:

Aïcha Diallo:

I empower patients by first defining empowerment and shared decision-making to them and their care partners. And I do this because when patients first hear the word cancer, nothing else makes sense, and they start feeling overwhelmed and even lost. So it’s very important to provide them information that is digestible and easy to comprehend, and making sure that they understand what it means to be empowered and having a seat at the table to effectively communicate with their healthcare teams so they get the equitable care they need.

It is essential for them to know that they are at the center of their care. They are the most important voice, they’re the leader and the CEO of their own care and their healthcare team. So for them to know that and to cherish that is very, very important. And I also want patients to know that the healthcare professionals are the experts at what they do, but they, the patients, are the experts at what they need, what they want, and who they are as unique individuals. So it’s important for them to remember that.

For me, empowering patients is also encouraging them to value this important role, and opening the door to engaging in shared decision-making by feeling comfortable to speak up about their care and being equipped to ask their healthcare professionals the right questions, share their goals and their concerns, because those matter as well. And being empowered is also involving their care partners in their decision-making process. You’ll hear me talk about care partners a lot alongside patients, because we want to celebrate them and emphasize that they are an important part of their loved one’s care, and often make the decisions with them or for them. So we always want to include them in the informative conversations to help make the best treatment decisions for patients living with cancer. 

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

 

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?

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

Dr. Cynthia Thomson: 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.

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

 

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

Dr. Cynthia Thomson: 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?

 

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

Dr. Brad Kahl: 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?

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.