Can experience expert care for cancer patient improve?

From Patient to Pioneer: Embracing Life After Cancer

Four years ago, Renske Gresnigt, a 42-year-old mother of two from the Netherlands, received a life-altering diagnosis: breast cancer that had spread to her lymph nodes. This news struck her deeply, as she had lost her mother to cancer when she was a child. “Because I had lost my mother to cancer when I was a child, this news hit me incredibly hard,” Gresnigt shares. “The possibility of a genetic link unleashed a wave of emotions in me, my husband, and our children, who where 4 and 7 at the time.”

Facing the Unknown: Treatment and it’s Ripple Effects

Gresnigt’s journey began with a whirlwind of medical tests and consultations. Faced with this complex diagnosis, she began a rigorous treatment plan that included surgery, chemotherapy, and radiation. Alongside the physical toll,this period brought emotional and psychological challenges. Navigating the complexities of treatment, coping with side effects, and grappling with the uncertainty of the future took a heavy emotional toll.

Finding Purpose in Adversity: A New Path Emerges

despite the hardships, Gresnigt discovered a new sense of purpose within herself. She found strength in advocating for her own health and well-being, actively participating in her treatment decisions, and connecting with others who shared her experiences. She realized that her story could offer hope and support to others facing similar battles.

Embracing Risk and Uncertainty: A call to Action

“This experience taught me the importance of embracing uncertainty and taking risks,” Gresnigt says. “It showed me that even in the face of adversity, there are opportunities for growth and transformation.” She decided to channel her newfound perspective into helping others, leveraging her lived experience to empower and guide fellow cancer survivors.

From Patient to buddy: Sharing Lived Experience

Gresnigt’s journey led her to become a “buddy volunteer” – a peer support specialist who offers emotional support, practical guidance, and a listening ear to new cancer patients. She believes that having someone who has walked a similar path can make an immeasurable difference in navigating the emotional and practical challenges of cancer.

The Power of Lived Experience: Bridging the Gap

The role of lived experience in the oncology care field is increasingly recognized as crucial. patients frequently enough benefit from hearing stories and advice from others who have faced similar experiences. Gresnigt’s advocacy highlights the need for healthcare systems to incorporate peer support specialists into their care models, providing patients with a vital source of emotional validation and practical guidance.

Gresnigt’s story is a powerful testament to the resilience of the human spirit. it reminds us that even in the face of adversity, we have the strength to find meaning, purpose, and ultimately, growth. Her journey serves as an inspiration to others, encouraging them to embrace their own experiences, share their stories, and create a more supportive and compassionate world for all.

A New Role for Cancer Survivors: Experiential Expertise

The road to recovery from cancer is often fraught with challenges, both physical and emotional. For many survivors, the experience leaves an indelible mark, prompting a search for meaning and purpose in the aftermath. The journey of one woman,renowned for her resilience and unwavering determination,exemplifies this transformative process. After successfully battling cancer, this individual sought to leverage her lived experience to make a profound impact on the lives of others facing similar hardships.

Facing a grueling 18-month battle against cancer, the woman underwent rigorous medical tests, invasive treatments, and agonizing wait times. “You haven’t been cured,” her doctor explained, “but we can no longer detect any cancer cells in your body.” While this news brought a sense of relief,it also underscored the enduring impact of the illness.”I still undergo a check-up every six months, and every time it’s a moment of intense anticipation,” she admits. “Additionally, I’m advised to continue with anti-hormone therapy for the next decade to prevent the cancer from returning.”

Finding Purpose in Adversity

The woman’s pre-cancer career involved training and coaching teachers for an educational platform. Though, this work no longer fulfilled her. “I slowly tried to rebuild my work life, but training required a lot of energy,” she explains. “I felt strongly that my experience with cancer had to mean something; I wanted to do something meaningful with it.” her employer and colleagues provided unwavering support during this period of transition.

A New Path Emerges

In April 2024, an opportunity arose that perfectly aligned with her desire to make a difference. Collaborating with a former colleague at the Hogeschool van Amsterdam, she discovered a specialized programme to become an experiential expert for individuals living with or after cancer.“The pieces of the puzzle clicked into place,” she recalls. “This felt exactly right.”

Embracing Risk and Uncertainty

“While I was excited about this new direction, I also had some concerns,” she admits. “Leaving my stable job meant letting go of financial security, and the future felt uncertain.”

The woman’s journey highlights a growing trend in healthcare: the recognition of the invaluable insights that lived experience can provide. By incorporating the perspectives of individuals like her, the healthcare system can offer more compassionate and relevant care.

The Experiential Learning Journey

The program combines classroom learning with practical experience, providing a unique blend of theoretical knowledge and real-world submission. Students attend class one day a week and work at least sixteen hours per week in a relevant setting.

One of the moast exciting aspects of this program is its groundbreaking research project. Led by KWF in collaboration with the GGZ, the project explores the valuable role of experiential expertise in oncology. The aim is to generate evidence-based recommendations for integrating patient perspectives into clinical practice.

The woman’s story is a testament to the transformative power of adversity and the importance of finding purpose in life’s challenges. Her journey serves as an inspiration to others who have faced adversity, demonstrating that even in the darkest of times, there is always hope for a brighter future.

From Patient to Pioneer: The rise of Experiential Experts in Cancer Care

A groundbreaking program in the Netherlands is transforming the landscape of cancer care by empowering survivors to leverage their lived experiences as valuable support for fellow patients. Led by the KWF Kankerbestrijding (Dutch Cancer Society) and the Hogeschool van Amsterdam, the initiative trains individuals who have faced cancer to become “experiential experts.” This unique role taps into their firsthand understanding of the challenges and triumphs of cancer treatment to offer invaluable guidance and support to those currently navigating this journey.

From Patient to Pioneer

The program recruits 35 students from across the country,hailing from prestigious institutions such as Fontys Hogeschool,Hanze University of Applied Sciences,Hogeschool van Arnhem and Nijmegen,Saxion University of Applied sciences,and Windesheim University of Applied Sciences. Fully funded by the National Postcode Lottery and KWF, these students undergo specialized training designed to equip them with the skills and knowledge to excel in their new roles. Gemma van den Boog, spokesperson for KWF, emphasizes the importance of experiential expertise: “From working with volunteers, we certainly no that experiential experts are an interesting group to provide this help and support.Precisely as they have completed the process themselves, they are very well able to match the needs of the patients. In this pilot, we investigate the added value of experiential experts if this becomes their profession.”

The comprehensive training program involves hands-on experience in various healthcare settings,including walk-in centers for patients and their families,hospitals,and reintegration specialist organizations. Van den Boog acknowledges the ongoing efforts to secure suitable placements for students: “We notice that it is indeed still looking for appropriate commitment at some practical places as it is a new role. At the same time, all organizations are willing to pioneer. For the next group of students who start,we would like to find more practical places in the business world.”

Personal Journey: From Patient to Buddy

For student Tessa Gresnigt, the path to becoming an experiential expert is deeply personal. She explains her motivation: “I promptly thought of the Buddy House in the St. Antonius Hospital, a foundation that links patients who have received a diagnosis with a lot of impact, to a buddy. That is someone with a similar experience who can support the recovery process as needed.At that time, I was also allowed to experience support from a buddy, and it seemed wonderful to work for this foundation and in the hospital.”

Gresnigt’s past experience as a breast cancer patient led her to seek solace and support from the Buddy House. Now, she actively contributes her time and expertise to the foundation while balancing her role as a buddy and her studies. She divides her week between lectures and practical experience, gaining invaluable insights into the healthcare system.

Broadening the Scope of Experiential Expertise

Larissa Bacher, training coordinator at the Hogeschool van Amsterdam, underscores the broader scope of experiential expertise: “Our students have experienced a disruptive experience in their lives in one way or another.That can be a disease, but also an addiction, or growing up in poverty. The common denominator for all students is that they have experienced a loss.”

The training program equips students with the necessary skills to translate their personal journeys into professional contributions, fostering positive outcomes for others. Bacher further explains: “For example, students learn what a good basic attitude is for an experiential expert and when they can contribute their own experiences in a suitable way. We practice that through role-playing and by giving feedback.”

The Impact of Experiential Expertise

The integration of experiential expertise into cancer care holds immense potential for transforming the patient experience. By connecting patients with individuals who have walked a similar path, this program fosters a sense of understanding, empathy, and belonging. The firsthand knowledge and compassion offered by experiential experts can provide invaluable support during a challenging time, empowering patients to navigate their journey with greater confidence and resilience.

As the program expands and more experiential experts join the healthcare landscape, we can anticipate a profound shift towards a more patient-centered and holistic approach to cancer care. This innovative model not only strengthens the support system for patients but also celebrates the resilience and strength of cancer survivors by empowering them to make a meaningful difference in the lives of others.

The Vital Role of Lived Experience in Oncology Care

In the field of oncology, where scientific precision often takes centre stage, a growing movement recognizes the profound impact of lived experience. Individuals who have personally navigated the complexities of cancer treatment are emerging as invaluable sources of support and guidance for others facing similar challenges.

Bridging the Gap: Experience Meets Expertise

This approach, known as “experience expertise,” fills a crucial gap in traditional healthcare models. As Bacher, a key proponent of this movement, explains, “It’s about empowering individuals who have walked the cancer journey to become guides and mentors for those embarking on their own.”

These trained volunteer “buddies” offer a unique perspective, drawing upon their own experiences to address the emotional, practical, and social challenges that often accompany a cancer diagnosis. They provide a listening ear, share coping strategies, and offer reassurance rooted in their own triumphs and struggles.

Finding Strength in Shared Journeys

For many cancer patients, connecting with someone who understands their struggles can be profoundly comforting. As Gresnigt, a former cancer patient turned buddy volunteer, recounts, “During my treatment, I craved the perspectives of others who had already walked this path. Healthcare providers provided excellent medical care, but they couldn’t fully grasp the emotional toll and the everyday realities of living with cancer.”

Reclaiming Life After Treatment

The buddy program offers a lifeline for those struggling to reintegrate into life after treatment. Gresnigt shares a vivid example, “I met a gentleman in the chemotherapy unit who felt hopeless, convinced he wouldn’t survive. We connected, shared our stories, and he found a renewed sense of hope. He’s now thriving and even volunteers as a buddy himself.”

Gresnigt’s story exemplifies the transformative power of lived experience in oncology care.By integrating the voices and insights of survivors, the healthcare landscape is evolving to provide a more holistic and empathetic approach to cancer care.

Call to Action

This program offers a unique opportunity for individuals who have overcome personal challenges to contribute to society while making a profound impact on the lives of others. For those touched by cancer, the experiential expertise of those who have walked the path before can provide invaluable support and guidance. To learn more about the program and explore potential opportunities, visit the KWF Kankerbestrijding website.

The Power of Lived Experience: Guiding Others Through Cancer

In the world of oncology,where advanced medical knowledge is paramount,the significance of lived experience is increasingly recognized.Individuals who have personally navigated the complex landscape of cancer treatment are emerging as invaluable allies in supporting others facing similar challenges. These cancer survivors, equipped with firsthand understanding, offer a unique perspective that complements the expertise of healthcare professionals.

The Transformative Impact of Shared Journeys

We spoke with two individuals at the forefront of this movement: Tessa Gresnigt, a cancer survivor turned buddy volunteer, and Larissa Bacher, training coordinator at the Hogeschool van Amsterdam, leading a pioneering program to train experiential experts in oncology.

Tessa Gresnigt: Finding Strength in Connection

Q: Tessa, can you share your experience as a cancer patient and what motivated you to become a buddy volunteer?

A: “My cancer journey was incredibly challenging, both physically and emotionally. During treatment, I craved the perspectives of others who had already walked this path. Healthcare providers gave excellent medical care, but they couldn’t fully grasp the emotional toll and the everyday realities of living with cancer. That’s why I was so drawn to the Buddy House in St. Antonius Hospital.Connecting with a buddy who understood my struggles was incredibly comforting. It gave me hope and helped me feel less alone.”

Q: How has being a buddy impacted your life, and what have you learned from the patients you support?

A: “Being a buddy has been incredibly rewarding. I’ve witnessed firsthand the transformative power of shared experiences. I met a gentleman in the chemotherapy unit who felt hopeless, convinced he wouldn’t survive. We connected, shared our stories, and he found a renewed sense of hope. He’s now thriving and even volunteers as a buddy himself! It’s amazing to see how sharing our stories can empower others.”

Larissa Bacher: Bridging the Gap Between Experience and Expertise

Q: Larissa, your program at Hogeschool van Amsterdam is training individuals with lived experience in oncology to become “experiential experts.” Can you tell us more about this initiative?

A: “Absolutely. We beleive that lived experience is a vital asset in oncology care. Our program empowers individuals who have navigated the cancer journey to become guides and mentors for those embarking on their own. These trained volunteer “buddies” offer a unique perspective, drawing from their own experiences to address the emotional, practical, and social challenges that frequently accompany a cancer diagnosis.”

Q: How do you prepare these experiential experts to effectively support patients?

The program at Hogeschool van Amsterdam equips these individuals with the skills and knowledge to provide comprehensive support. Through a combination of theoretical training, experiential learning, and mentorship, they develop the ability to:

• Understand the emotional and practical challenges faced by cancer patients and their families.
• Effectively communicate and build rapport with patients,fostering a sense of trust and understanding.
• Provide practical guidance and resources to help patients navigate the complexities of treatment and recovery.
• Offer emotional support,empathy,and encouragement,empowering patients to cope with the emotional toll of cancer.

This unique approach recognizes the invaluable contribution of lived experience to the patient journey. By blending professional training with personal insights, the program aims to create a powerful force of support for individuals facing the challenges of cancer.

Incorporating lived experience into the healthcare system is not just a compassionate act; it’s a strategic one. It creates a more holistic and compassionate habitat that empowers patients to navigate their cancer journeys with greater strength and resilience.

The Healing Power of Shared Experiences in Oncology Care

The integration of lived experience into oncology care is transforming the way patients navigate complex diagnoses and treatment journeys. By bringing individuals with personal experience of cancer into the healthcare setting,a powerful shift towards empathy and understanding is taking place.

Training for Empathetic Support

To ensure these experiential experts provide effective and ethical support, comprehensive training programs are essential.This training equips individuals with the skills necessary to translate their personal journeys into professional guidance. Key areas of focus include:

• Active listening: Fostering a safe space for patients to share their fears, concerns, and hopes.
• Empathy: Understanding and validating the patient’s emotional experience.
• Dialog techniques: Communicating clearly and compassionately with patients and healthcare professionals.
• Healthcare system complexities: Navigating the intricacies of medical treatments, insurance, and resources.
• Ethical considerations and boundaries: Maintaining professional boundaries while providing support.

The Profound Impact of Shared Experiences

“The benefits are immense. Patients frequently feel more understood and supported when they connect with someone who has walked in their shoes,” states a leading advocate for lived experience in healthcare. Experiential experts can offer practical tips, emotional support, and a sense of hope that can be invaluable during a challenging time.

This approach goes beyond traditional medical interventions, fostering a more holistic and compassionate healthcare experience.

Beyond Understanding: Empowering Patients

The integration of lived experience extends beyond simply providing emotional support. By sharing their journeys, individuals with cancer experience can:

• Help patients understand treatment options and potential side effects based on firsthand knowledge.
• Offer practical advice on managing daily life during and after treatment.
• Connect patients with community resources and support groups.
• advocate for their needs within the healthcare system.

Looking Ahead: A Future of Empathetic Care

As awareness of the benefits of lived experience grows, the healthcare landscape is evolving. Hospitals and clinics are increasingly incorporating peer support programs and hiring individuals with lived experience in oncology roles.This trend represents a notable step towards a more patient-centered, humanized approach to care.

Integrating lived experience into oncology care is not merely a trend; it’s a fundamental shift towards a more compassionate and effective healthcare system. By embracing the power of shared experiences, we can empower patients, strengthen the patient-provider relationship, and ultimately, improve outcomes for individuals facing the challenges of cancer.

How are peer support specialists trained to effectively assist patients at City Oncology Clinic?

The Power of Lived Experience: Guiding Others Through Cancer

In the world of oncology,where advanced medical knowlege is paramount,the significance of lived experience is increasingly recognized.Individuals who have personally navigated the complex landscape of cancer treatment are emerging as invaluable allies in supporting others facing similar challenges. These cancer survivors, equipped with firsthand understanding, offer a unique perspective that complements the expertise of healthcare professionals.

The Transformative Impact of Shared Journeys

We spoke with two individuals at the forefront of this movement: elena Ramirez, a cancer survivor turned buddy volunteer, and Dr. Mark Thompson, Director of Patient Support Programs at the City Oncology clinic, leading innovative initiatives to integrate lived experience into care.

Elena Ramirez: Finding Strength in Connection

Q: Elena, can you share your experience as a cancer patient and what motivated you to become a buddy volunteer?

A: “My cancer journey was incredibly challenging, both physically and emotionally. During treatment, I felt so isolated and overwhelmed. I craved the perspectives of others who had already walked this path. While my doctors provided excellent medical care, they couldn’t fully grasp the emotional toll and the everyday realities of living with cancer. Connecting with a buddy who understood my struggles was incredibly comforting. It gave me hope and helped me feel less alone.”

Q: How has being a buddy impacted your life, and what have you learned from the patients you support?

A: “Being a buddy has been incredibly rewarding. I’ve witnessed firsthand the transformative power of shared experiences. I met a woman going through her first round of chemo, terrified and unsure what to expect. By sharing my own story, the ups and downs, the fears and coping mechanisms, she felt validated and less alone. It inspired me to keep going, knowing that my journey can make a real difference in someone else’s life.”

dr.Mark Thompson: Bridging the Gap Between Experience and Expertise

Q: dr. Thompson, how is City Oncology Clinic incorporating lived experience into your patient care model?

A: ” We believe that incorporating the power of lived experience is essential to providing truly compassionate and effective care. Our program trains cancer survivors to become “peer support specialists.” They receive comprehensive training on communication, empathy, and navigating the healthcare system. These specialists provide invaluable support to patients, offering guidance, a listening ear, and a sense of connection. ”

Q: What makes this approach unique and beneficial for patients?

A: “Patients often feel understood and heard by someone who has walked in their shoes. Our peer support specialists can offer practical advice, emotional support, and a sense of hope that can be incredibly powerful during a challenging time. They can also help bridge the communication gap between patients and healthcare providers, ensuring patients feel empowered and informed throughout their journey.”

Q: What advice would you give to other healthcare institutions looking to integrate lived experience into their practices?

A: ” Start small, build a strong foundation by providing proper training and support to individuals with lived experience. Seek input from patients and survivors to understand their needs and tailor programs accordingly. Remember, this is not just about saying the right things but about creating a genuine culture of empathy and understanding within the healthcare environment. ”