Tag Archive for: patient advocates

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

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

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.

The Price of Passion: Self-Care for the Online Advocate 

The start of a new year often brings fresh energy and a reinvigorated commitment to creating positive change in the world. For health advocates, this might mean harnessing the power of online platforms to raise awareness, mobilize communities, and drive meaningful change. While the digital landscape offers unparalleled opportunities, it also comes with distinct challenges that can impact our mental and emotional well-being. 

Striking a balance between advocacy and self-care isn’t just important—it’s essential for sustaining this vital work over the long term. By nurturing our own well-being, we ensure we can continue to make a difference while protecting our passion and purpose. 

The Emotional Labor of Advocacy

Patient advocacy is deeply personal. It often involves sharing our own stories or offering support to others navigating similar challenges. While this vulnerability can create meaningful connections, it can also take an emotional toll. The constant exposure to difficult narratives, coupled with the relentless pace of online engagement, can significantly impact our mental and emotional well-being. 

Recognizing Burnout

Burnout can creep in subtly, often showing up as a gradual decline in well-being rather than a sudden crisis. It’s important to pay close attention to warning signs such as: 

  • Emotional Exhaustion: This is a core symptom of burnout, characterized by feeling drained, irritable, and emotionally detached. You may find yourself easily overwhelmed, lacking empathy, and experiencing a general sense of apathy towards your advocacy work. 
  • Decreased Engagement: A significant shift in your advocacy involvement, such as loss of enthusiasm, lack of motivation, and a sense of detachment from your cause. 
  • Cynicism: A growing sense of negativity and criticism towards your own efforts, disillusionment with advocacy progress, and even feelings of hopelessness or despair.  
  • Physical Symptoms: It is also possible to experience burnout physically. Chronic fatigue, sleep problems, headaches, or other physical problems may occur. These physical symptoms can further compound emotional exhaustion and decrease your overall well-being. 

Identifying these signs as early as possible is important for preventing burnout from escalating. Taking proactive steps to address these warning signals can protect your well-being and ensure the sustainability of your advocacy work for the long term. 

Online Advocacy and Self-Care: Practical Strategies

Let’s explore some effective strategies for navigating the online world while maintaining your mental health.

1. Set Boundaries

Creating a healthy online presence begins with establishing strong boundaries. Here are some practical strategies to support this: 

1.1. Implement Time Blocking

Time blocking is a powerful time management technique that helps you allocate your time more effectively and avoid digital overwhelm. 

    • Choose a consistent time for planning, such as the end of your workday or the start of your morning. 
    • Identify your top priorities for the upcoming work session. 
    • Estimate the duration of each task and include a 25% buffer for unexpected delays. 
    • Schedule tasks into your calendar, ensuring you have clear focus periods. 
    • At the end of the day, review your progress to adjust and improve your future planning. 

1.2 Create “Tech-Free” Zones

Designate specific areas in your home, such as the bedroom or dining table, as technology-free zones. This simple step encourages a healthier balance between online and offline life, helping you recharge and stay present in the moment.

1.3. Use Website Blockers

Tools, such as Cold Turkey1, Freedom2 and StayFocusd3 restrict access to distracting sites during designated work periods. These tools help you maintain focused attention on your tasks by removing the temptation to engage in non-productive online activities. By creating a distraction-free digital environment, you can stay on track and accomplish your goals more efficiently.

2. Leverage Online Tools and Resources

2.1 Social Media Management Tools

Schedule posts in advance, analyze engagement metrics, and track mentions of your cause or keywords with tools like Buffer.4 This not only saves you time and effort but can also provide valuable insight into how people are engaging with your content.

2.2 Mental Health Apps

There’s a wide variety of mental well-being and stress management apps available to support your mental health. These apps offer a range of features, such as guided meditation, mindfulness exercises, breathing techniques, and relaxation practices. Regular use of these tools can improve focus, reduce stress, and help you cultivate a sense of calm, making them valuable companions for maintaining emotional balance in a busy digital world.

3. Curate Your Feeds 

Finding a balance between staying informed and protecting your mental health is essential. Curate your online feeds to minimize exposure to negativity by unfollowing or muting accounts that consistently trigger feelings of anxiety, anger, or hopelessness. This intentional approach to managing your digital environment can have a positive impact on your overall mood, helping to reduce stress and lower the risk of burnout.

4. Share Your Truth On Your Terms

Authenticity is important in advocacy, but it’s equally important to prioritize your well-being. Remember you have the right to control what you share and when. Avoid oversharing or disclosing information that may make you feel uncomfortable or unsafe. 

5. Cultivate A Supportive Online Community

Advocacy is not a journey meant to be traveled alone. Building a supportive network is important for both personal well-being and professional growth. Such a network becomes a safe haven where you can express frustrations, celebrate wins, and process complex emotions without judgment. Personally, I’ve found immense validation, encouragement, and friendship through connections with fellow advocates. These relationships have not only enriched my journey but have also inspired me to keep moving forward. By working together, we can amplify our collective impact and achieve far greater success in advancing our advocacy goals. 

6. Develop Strong Communication Skills

Strong communication skills are essential for effective online advocacy and vital for maintaining your self-care. By practicing active listening, engaging in respectful and constructive dialogue, using “I” statements, and mastering de-escalation techniques, you can cultivate a more positive and supportive online environment for yourself and others.

7. Know That It’s Okay to Say No

It took me a long time to learn that it’s okay to say no. When I first became a patient advocate, I felt compelled to say yes to every opportunity, believing that doing so was necessary to make a difference. Over time, I realized that declining opportunities that don’t align with my priorities or that overextended my resources is not a failure—it’s an essential act of self-preservation. By setting boundaries, you create space to focus on the initiatives that matter most to you and where your efforts can have the greatest impact. In the long run, honoring your limits enables you to show up more fully for the causes and communities that inspire you.

8. Prioritize Self-Care

Prioritizing self-care isn’t a luxury—it’s a necessity for sustainable advocacy. Actively nurturing your physical, mental, and emotional well-being is essential for maintaining your passion and effectiveness over the long term. 

  • Make Time For Yourself: Schedule regular breaks from screens to give your mind and body a chance to rest and recharge. Disconnect from the constant influx of information and dedicate time to activities that bring you joy and relaxation. 
  • Physical Wellness: Ensure you’re taking care of your body with regular exercise, a balanced diet, and sufficient sleep. Advocacy work can be demanding, and maintaining physical health helps you stay resilient and energized. 
  • Engage in Activities You Love: Invest time in pursuits that bring you fulfillment, whether it’s spending time in nature, connecting with loved ones, diving into a favorite hobby, or enjoying a good book. These activities reduce stress, lift your mood, and provide a much-needed reprieve from the demands of advocacy work. 
  • Celebrate Your Wins: Take time to acknowledge and celebrate your achievements, no matter how small. Recognizing your efforts—even the seemingly minor ones—can boost your confidence, sustain your motivation, and remind you of the impact you’re making. 

Remember, self-care isn’t selfish—it’s an investment in your well-being. By prioritizing yourself, you’re better equipped to show up fully for your advocacy work and the communities you serve. 

Empowered Care: A Patient’s Guide to Navigating Endometrial Cancer

Empowered Care: A Patient’s Guide to Navigating Endometrial Cancer from Patient Empowerment Network on Vimeo.

Meet Sharon, a 61-year-old endometrial cancer survivor who knows firsthand the importance of being an active participant in her healthcare. After a two-year struggle with misdiagnosed symptoms and a dismissive doctor, she took charge and found the right medical support, leading to a diagnosis of endometrial cancer.

Sharon’s journey, from diagnosis to treatment and recovery, highlights the vital role of self-advocacy and patient activation. Her story is a beacon for others, especially women of color facing similar challenges, emphasizing the power of being informed, asking questions, and seeking support.

Download Guide | Descargar Guía en Español

See More from [ACT]IVATED Endometrial Cancer

Related Resources:

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

How Is Gynecological Cancer Care Impacted by Social Determinants of Health?

How Is Gynecological Cancer Care Impacted by Social Determinants of Health?

How Can Gynecologic Oncology Racial Disparities Be Addressed

How Can Gynecologic Oncology Racial Disparities Be Addressed

Transcript:

Being activated is a critical part of endometrial cancer care, especially for patients like me. 

My name is Sharon, I’m 61, and my diagnosis came after a two-year struggle with unidentified symptoms. Sharing my experience is my way of reaching out, hoping it might provide guidance to others facing similar challenges.

My symptoms began with abnormal vaginal bleeding, but my periods had ended over 10 years ago. That had me worried, and my sister encouraged me to see a doctor after I told her about the bleeding. I scheduled an appointment, but my doctor dismissed my symptoms. I felt like he wasn’t really listening to me and decided to find a doctor who looks more like me and would be more likely to listen to me. I found a Black female doctor who was concerned about my symptoms, which had worsened by then. I was also feeling pelvic pain. My new doctor scheduled an endometrial biopsy, and I was diagnosed with papillary serous carcinoma shortly afterward.

With an aggressive type of cancer, my oncologist scheduled a laparoscopic hysterectomy to remove my uterus along with my ovaries, fallopian tubes, and sentinel lymph nodes. I had the surgery within a few days, which was quickly followed by radiation to help ensure any remaining cancer cells were wiped out. My recovery went smoothly, and I continue to live a full life while getting regular scans to ensure I remain cancer-free.

After my cancer experience, I want to educate other women about what I’ve learned about endometrial cancer. Black women have nearly twice the death rate from endometrial cancer compared to white women. Hispanic, Black, and Asian women are not represented in clinical trials at equal rates to white women. And Black women are also diagnosed more frequently with rare but aggressive endometrial cancer forms. Remember that you shouldn’t have to suffer with your pain, and you can advocate for yourself and ask about patient advocates to advocate on your behalf.

Here are my activation tips for patients facing an endometrial cancer diagnosis:

  1. Ask your care team questions to learn about the status of your endometrial cancer, treatment options, and what to expect during and after treatment.
  2. Join a patient support group to offer and receive emotional support.
  3. Last but not least, inquire if a clinical trial may be a potential treatment option for your endometrial cancer.

Remember, stay activated by being informed, empowered, and engaged in your cancer care.


Share Your Feedback:

Create your own user feedback survey