Education and Training

Finding Value in the Patient Experience

Health systems around the world are often strained due to the high burden of costs. The idea of value frameworks has arisen as an attempt to guide decision-makers in their choices on behalf of patients. These value frameworks evaluate all aspects of cancer treatment: clinical benefit, side effects, and improvement in patient symptoms or quality of life. But given the complexities of the multitude of health systems around the world, it is not a straightforward discussion. Currently, the dialogue is primarily driven by thought leaders and health economists from the United States and Europe. But there are critical voices missing from this discussion: patients and patient advocates.

Recently, I had the opportunity to meet with a group of advocates from around the world to discuss value frameworks in an attempt to create a “patient framework” of our own. While that goal was too ambitious for the time we had together, we agreed on the need for input from the patient and advocate perspectives to help inform us what ‘value’ means. The result of this meeting was an article just published in the Journal of Health Expectations, co-authored by international advocates for cancer care.

Read the publication: Patient value: Perspectives from the advocacy community.

Sitting together with patient advocates from around the world to discuss what brings value to patients was eye-opening. We explored the intricacies of our health system realities and distilled what some of the universal components or best practices are commonly shared within all these systems.

In many ways, this collaborative journal article was in response to methodologies on the value frameworks created by the American Society of Clinical Oncology (ASCO) and the European Society for Medical Oncology (ESMO.) Advocates felt strongly that patient voices should be heard and valued deeply throughout the whole process of creating the value frameworks. Both ASCO and ESMO followed up on their original publications with updates that reflect and integrate some of the ideas outlined in our publication. You can see their updates below:

As a group of international advocates, we acknowledged that issues central to patients are not always the same ones prioritized by those who make decisions based on cost, or even pure research, without patient-reported outcomes. We wondered aloud how decisions can be made for us but without us. This publication was a way to take action and assert our viewpoints in the global dialogue happening today.

See how we are bringing the patient voice to value frameworks. Read the publication and share your feedback in the comments.

Solidarity Ties Through the Mountains

Nestled in the mountains of Peru, there’s a place called Cusco where you’ll find the cancer patient group, Lazos Solidarios (Solidarity Ties). Yusef Herrera, created Lazos Solodarios to help cancer patients in this remote region in 2009 and today, the organization is supporting families facing CML and LLA, many of them children. Yusef, a dentist, became a committed advocate to close the cancer divide between these rural communities and their access to treatment and support.

In the beginning, there were many national security problems in an area dominated by drug dealers and terrorists. People were unprotected and scared, and a cancer diagnosis the last worry they needed. Yusef was joined by an economist and physician, and together, they worked to change the quality of life of the rural farmers, taking them out of illegal activities and guiding them through the process of coffee exportation. Farmers were empowered by the new trade and families benefitted from health and awareness campaigns that improved their well-being.

In 2009, they turned their focus on the city of Cusco, developing solidarity jobs with a group of teenagers in hospitals. They decided to create an organization with the objective of developing solidarity among the villages of Peru. That was the birth of Lazos Solidarios.

During 2010, they worked in the childhood leukemia unit of Antonio Lorena Hospital, a hospital in Cusco for people who need primary care, mainly farmers. They organized playful activities for children and their parents. Yusef also developed activities that would encourage blood donation. Little by little, they made strides in their efforts to support the hospital’s leukemia unit.

This year, Yusef found himself in a difficult situation at a hospital in Lima. Children from Cusco had to travel to Lima to do PCR tests to ensure their cancer treatment was working properly. These children were living at the hospital because they couldn’t afford to pay for accommodation in Lima. Some of these patients were working by selling candies at the hospital’s entrance and corridors.

Yusef and his team had to address the situation. They decided to make the 20-hour car-ride journey to transfer the samples themselves from Cusco to Lima as many times as necessary. Yusef has also started the process to transport biological samples by airway, currently being considered by the Peruvian Congress.

Meanwhile, Lazos Solidarios continues to fulfill its mission, working in favor of prevention and promotion against cancer and bridging the cancer divide to bring dignity and hope in the face of cancer.

Vulnerability

“Don’t cry baby, you’re a strong kid,” what I normally hear when parents try to console their children here. As I’m growing older (there you go my honest confession), I come to learn it’s okay to cry, to be sad and to be vulnerable at the certain time.

These past two weeks also in a way regained my perspective about vulnerability.

Each month, I call all 18 families of Max Schooling Project, an initiative of The Max Foundation to support children whose families are affected by a cancer diagnosis. January marked my first “anniversary” of our relationship. If I can describe our relationship in marriage term, it’s still in “honeymoon” phase.

I am beyond grateful to learn so much about people and real challenges. Challenges such as: families with only RM 900 (around $200) to spend monthly with 5 children; families living with grandparents because they could not afford housing; or eldest children needing to drop out school to support their families…I heard them all. It hit me when I recently spoke with a mother and she burst into tears while telling me her struggles. I was unsure on how to best console her, so I chose to keep silent for a moment. I let her being vulnerable. I should not stop her from crying, that’s one thing I was sure about.

That’s when I found myself reflecting about vulnerability. In a way, vulnerability is an impact. After hours of phone calls throughout the year, families have opened themselves up to me. The vulnerability is not just a spur of the moment but hopefully built on mutual trust and respect. I gain a new perspective about vulnerability – it draws out your strength when you respond to it with care.

When someone is vulnerable to us, it comes with a sense of responsibility. At The Max Foundation, we value that our patients open up themselves, telling things they are fearful of or things that may be viewed as “weaknesses”. It’s not just about how much money they earn per month, but about their life. It goes beyond facts, you know. We’re dealing with real people with very real feelings. When someone is vulnerable, I have focused less on trying to say the right thing, and more on attentively listening to them first and lifting them up in the midst of their grief.

I can’t wait to unfold their beautiful stories through my next monthly phone calls. We learn best when we are willing to listen. The most important thing is being vulnerable is not being weak. That’s what I have learned through this initiative. I am grateful to be able to learn about the precious lessons from my day-to-day job.

Researching CML Patients in India

A new study in Clinical Epidemiology and Global Health features the Glivec®Patient Assistance Program (GIPAP) and reveals that “chronic myelocytic leukemia (CML) is diagnosed at an earlier age in poorer populations than in more affluent populations.” The study focused on India’s CML population to investigate other possible contributors to early age at onset. The team of authors include our very own South Asia Region Head Viji Venkatesh, and Max CEO Pat Garcia-Gonzalez, as well as Paul H. Levine, Kunal Ajmera, Brenna O’Neill, Heather J. Hoffman.

The study is only available to the public for a limited time so if you know a physician or researcher that would benefit from this study, share it today!

Read the Article

Not Just a Diagnosis, Cancer Touches so Many Lives

Cancer is a life-changing event; not just a medical condition. It changes your priorities, causing you to make different life choices.

People facing cancer sometimes choose to delay their treatment in order to send their children to school. That is what is being observed by Dr. Ong from the Hematology Department of Hospital Ampang, one of the important people behind the inception of The Max Schooling Project (or Sambung Sekolah in Malay) in 2014.

“This project is to make the children feel they are not different from their friends. For example, they could also go to the school trip. They deserve to enjoy the same school experience.”

“We’re also giving a chance to the community to help these children who are normally unnoticed,” Dr. Ong added.

Through the Max Schooling Project, hospital physicians refer children to The Max Foundation’s Malaysia team. The Max Foundation matches children with an ‘adopter’ who coordinates financial assistance on a monthly basis for the child. The Max Foundation carries out regular follow-up contact with the enrolled child and their family to provide financial and emotional support.

I have the opportunity to call all the families on the monthly basis. One of the families is Kak Ida’s. We have talked on the phone for 9 months now. Every month, I will chit-chat with Kak Ida. Her only child is one of the 7 children who are the early beneficiaries of the project. If I am lucky, I manage to talk briefly with her shy son, Ahmad.

The pain from her chemotherapy treatment that made her sleepless, and her vomiting blood with the chest pain, she told me all through our monthly phone calls. Her openness shows she is the right person to speak before the Maximize Life Campaign audiences.

It was a quiet Wednesday morning in August, we finally met for the first time. Amid the nervousness, I greeted her, quietly standing behind her is Ahmad. She smiled a charming smile. In the next hour, she shared about her journey, when it started, how far she has come.

Being diagnosed with Hodgkin Lymphoma (a type of blood cancer) since 2012, she is not only a cancer survivor but a single mother to her teen son, Ahmad. He was only 12 years old that time, and cancer was like an alien. He was only aware that his mother was sick, dressed in a hospital gown for 6 months. He was taken care by his grandmother during the difficult time.

Kak Ida is a sole breadwinner — working at a factory, his teen son is still in high school, taking care of her sick parents, they are all living in the humble flat.

I asked her how she reacted to the cancer diagnosis.

“Treatment cost, how would I manage that?” Her doctor referred her to the hospital social department to ease the financial burden.

“My son, he is the motivation for me to keep going. I will do my best to take care of you, even though you’re being abandoned by your father,” her voice was breaking into sobs and tears rolled down her cheeks.

I paused. I reached for her hands and squeezed them gently.

She also confessed that she planned to quit her job after being hospitalized for 6 months. She felt guilty. She has been working in the factory for 8 years that time. But her diagnosis could not change the fact that she is a good employee. Her employer not only visited her in the hospital and talked with her doctor, they also assured her she could stay working and seeking treatment.

Now, after four years, she knows her health should be prioritized. She trusts her doctors and is compliant to improve her health. She wants to do the best for her son and her parents. Every time she goes to the hospital, Ahmad will accompany her. He wants to make sure his mother is not fainting, especially during the bus ride to the hospital.

Ahmad is a lanky boy with a bit tanned complexion. Throughout my conversation with his mother, I noticed he was listening attentively.

“How do you feel knowing your mother has cancer?” I asked him.

“I feel sad seeing my mother in pain.”

His answer reminded me of love, by its nature, is unconditional. As we finished talking, I realized Ahmad has become more opened. He shared his dreams to become a policeman and to represent Malaysia in Sepak Takraw.

I gain a deeper understanding of how cancer touches more than a patient. It can be very difficult for some people to understand the needs of people living with cancer. But Kak Ida’s willingness to share her testimony in this year Maximize Life Campaign can increase the local community awareness and the support for people living with cancer.

And through it all, a cancer survivor like Kak Ida remains a loving daughter and mother. Having cancer doesn’t define her. Max Schooling Project reminds us that the care is ultimately delivered at the individual level “Who is this person I’m speaking with?”

Let’s Come Together, Shall We?

This year, the Malaysia team set a goal of creating deeper connections in our local patient initiatives. We wanted to see our patient community connect with each other. We changed the format of our patient workshops from seminars into intimate, casual gatherings. “Let’s Sama-Sama” (Let’s Come Together) is a space for patients to build stronger relationships with each other and to encourage more sharing and learning alongside disease education.

I forgot to tell you an important fact! In our culture, Sama-Sama is a notion of togetherness: “We’re in this together, you got my back.”

Last Sunday, we organised our very first “Let’s Sama-Sama” gathering in a nearby park. The sun was shining brightly (personally, I prefer sweat rolling down my cheeks!) and around 60 people turned up, 40 of them were patients and caregivers. For this event, we prioritise newly-diagnosed patients (those diagnosed within the last 18 months.)

With the goal of a more casual and intimate gathering, we started the day with a brisk walk – all the patients, volunteers, and even our doctors walked together early in the morning. People were already talking, making jokes, and even taking selfies! The day continued with us splitting into groups, each led by a facilitator (Max Family Core Member) and doctor, and all joined in discussion.

I was surprised to see how much honesty can be revealed once you have established connection with each other. A new patient shared his struggles when he was first diagnosed about 4 months ago.

“I did not tell my wife and my mother about the diagnosis, I did not want to make them worried. I also need to adapt to my new lifestyle. I do not go to the gym now as frequent as before, I was advised to have a lot of rest.”

As I was listening to his story, I could see he did not stop smiling. His story did not emanate negative vibes at all, he was so optimistic and open. His story encouraged other participants to share their experiences. Somehow it empowered all of our struggles – the patients realized they were not alone. This allowed for each of them to share their own battles with the group.

“Let’s Sama-Sama” created a safe and conducive environment for our community to open up. What’s more powerful than learning about our patients through hearing their stories?

Ironically, I haven’t seen the patients laugh so much before. It was wonderful to capture their joy. They were so courageous, not only to coming to terms with their diagnosis, but taking a step forward: To be inspired and inspiring others.

 

Can a Blood Test be an Incentive for Education?

For many patients, there aren’t many opportunities for them to learn about their disease directly from experts. So when the opportunity to hear from a hematologist at Naresuan University Hospital in Thailand, we were excited to maximize the event.

Naresuan is a teaching hospital regarded as one of the key hospitals in northern Thailand, and our contact, Dr. Rawisut serves as a resident physician at the hospital in charge of multiple myeloma patients. He expressed a strong desire for his patients and other patients in this area to gain a deeper understanding of their disease. Talking to him over the phone, he gave us an insightful observation: patients and caregivers in the region are not well-educated and can be indifferent with following up with their disease. A major concern is that people in this area are not serious on doing blood test due to financial difficulty.

Dr. Rawisut came up with a brilliant idea: he asked if we could perform blood test for any patients in attendance. Patients would receive the results after the education portion of the event so that they may fully understand the importance of these blood tests. I was so happy to hear about this passionate physician who is so thoughtful for his patients.

On December 3, 2015, we hosted the multiple myeloma workshop and opened the event with registration and blood test done by Dr. Rawisut. We gave away MaxSmiles bags (MaxSmiles is the local patient support group) and The Max Foundation wristband. The environment was full of positive spirit. Dr. Peerapol, the head of internal medicine department, spoke a few words and expressed his gratitude for The Max Foundation and their emotional and psychological support for patients. He is also a fan of our MaxSmiles newsletter!

The event proceeded with the educational session led by Dr. Rawisut. He gave a simple yet knowledgeable presentation and had two patients share their treatment experiences about multiple myeloma treatment. One patient was treated with a bone marrow transplant, the other with Revlimid®. The educational program also involved okessays.com project. The goal was to show the differences in treatments and what criteria one should consider when deciding on a treatment course. It was a powerful presentation since it came from the real experiences of patients.

After the event, Dr. Rawisut shared the blood test results for each patient and gave them suggestions for taking care of themselves. I am proud to say that this was the best multiple myeloma workshop ever in Thailand. I witnessed the dedication of Dr. Rawisut and the healthcare providers at Naresuan hospital. We collaborated well as a team. Lesson learned from this workshop is that heart full of love and compassion can do anything under the Sun. If we have sincere heart to do good deeds, we will achieve it and achieve it successfully.

Rising Sun, Part 2: Not Just Another Love Story

Waheeda and friends at Rising Sun.

Waheeda and friends at Rising Sun.

The beauty and thoughtfulness of the dinner was a true expression of love.

The beauty and thoughtfulness of the dinner was a true expression of love.

MaxSmiles team members generously serve us a delicious Thai dinner.

MaxSmiles team members generously serve us a delicious Thai dinner.

Our guest blogger is Waheeda Hasbullah is a Project Executive with the Malaysia team in Kuala Lumpur and recently attended the Rising Sun conference in Bangkok. She has an educational background in biotechnology.

People, by nature, are not perfect and sometimes we forget how to love each other well. The dinner at the Rising Sun 2015 meeting prepared by MaxSmiles Thailand, was a reminder to me. Admittedly, I attended the dinner with the intention of eating as much Thai food as I could. Wirat, Thailand Senior MaxStation, reassured me that I would not be disappointed that night. He was totally right; who would’ve thought the dinner would feed my soul.

As soon as we have arrived, the MaxSmiles team members warmly welcomed us. The dinner venue was stunning: it reminded me of a Malaysian wedding receptions. From the choice of flowers to hall arrangements, the love manifested throughout the space. No detail was left unnoticed; they reflected just how much effort was put in for this dinner and showed how much the members cared. I would describe the dinner as a beautiful union between MaxSmiles and the Rising Sun participants, even though we were practically strangers.

Funnily enough, I only tried one or two Thai cuisines that night. Do you remember how at first I wanted to try as much Thai food as I could? There was nothing wrong with the food at all. In fact, they were all cooked perfectly. I was simply filled with so much love. You may think it sounds a bit silly but the truth is that love was in the air.

I ended up going to the food section and met with the patients. We exchanged very few words, due to the language barrier. Most of the time we were just smiling to each other yet I feel somehow we understood each other. That was when a few of Muslim patients approached me – they could tell I am a Muslim from my hijab (headscarf). We spoke different languages and were raised up in different cultures, yet we are bonded by the same faith. It doesn’t have to be faith or religion, there will always be something that brings us all together. We were connected by the strong bond of love that night, and my writing will never be enough to justify the love we received.

Our generous hosts threw so many great surprises but my favorite one was the surprise for Pat. They were all gathered in the hall to be able to see Pat in person for the first time. I could see how excited they were from my seat at the back of the hall – they couldn’t help but to smile in admiration. They presented an amazing tea set for Pat and the Novartis. I was touched by how someone could love so deeply and generously. The moment made me tear up, and I was humbly reminded about the most important lesson, to love genuinely.

I never thought I would get a sweet little surprise until a small group of lovely Muslim patients approached me for a picture. They were trying their best to tell me that they’re Muslims too. We spoke to each other with very minimal words and managed to capture the moment with a photo. They kept holding my hands and looked me deep into the eyes. I saw affection, and I was truly humbled. They did not know anything about me at all, yet they made me feel so loved. Luckily, Piyapong managed to join us at the end of the conversation, helping us with the translation. I made sure to tell them how happy I am to be there.

That night we literally tasted love, I couldn’t agree more on what Pat has said in her speech: that night, love is being spoken without words.

Rising Sun 2015 Expands the Capacity of Patient Advocates Throughout Asia Pacific

More than 45 patient advocates came together for the 2015 Rising Sun meeting in Bangkok, Thailand on October 9-11. Rising Sun, the Asia Pacific regional event, is an initiative driven by The Max Foundation in partnership with local patient groups that aims to enhance the capacity of patient-advocate leaders, increase the well-being of patient communities, and raise disease awareness through learning and sharing opportunities.

Starting this year, we expanded the conference to include chronic lymphocytic leukemia (CLL) along with our focus on chronic myeloid leukemia (CML). Most of the patient groups in Rising Sun network serve as the only blood cancer support groups in their local country. The addition of CLL education through Rising Sun will allow patient advocates to support this specific sub-group throughout Asia Pacific.

Hematologists from different countries educated us on different topics such as international perspectives, regional best practices, local management, and drug approval and monitoring.

There was rich discussion in each session as patient advocates raised questions and concerns about accomplishing their goals. Our patient-centered speakers were excellent in providing a clinical view grounded in the patient’s reality. Patient advocates spoke from the patient community perspective, and everyone shaped the discussion towards ways to work together across all stakeholders – from physicians to patients to industries and policy makers.

Rising Sun is not only about disease education. Our second day focused on fundraising strategies and tactics for patient groups. Participants gained skills in online fundraising and social crowd-funding with plenty of time devoted to productive brainstorming.

This year’s meeting was the best one yet based on a few highlights:

  • The quality of discussion raised;
  • The maturity of patient advocates;
  • The move from self-centered towards community-centered;
  • The dedication and efforts of our speakers; and
  • The participation of participants – from interpersonal discussions to group involvement.

Rising Sun is more than just a meeting, it holds us tight as a region. Beyond a learning and sharing platform, it is also a touching reunion for patient advocates that see each other as family.

Nurses Filling the Gap for Patients in Southern Africa

blogpost391_1In an ideal world, a diagnosed cancer patient would receive disease and treatment information from their physician and healthcare workers at the clinic. With access to technology, they would broaden their knowledge and gain additional support from a patient group. Family and community members would also play a supportive role in searching for information and support.

The reality in Southern Africa is not ideal and can be very harsh for patients.

Working in South Africa comes with many challenges. Many of these challenges are shared with other African countries and likely shared by many around the world:

  • Patients live far away from clinics and have limited access to specialized physicians.
  • Patients do not have residential addresses or postal addresses – Block 5 Tree 16 is not reliable information.
  • Patients speak various languages (11 official languages in South Africa to be specific) and many are illiterate.
  • Patients do not have access to phones, cell phones or the internet.

We spend a lot of time sharing information with physicians and educating patients on ground level but we often forget about those who spend most of their time with patient – drawing blood, filling out forms, and administering treatment – our wonderful, supportive assistive healthcare workers a.k.a. nurses!

I shared my vision with Danielle that we should start a program in which we provide supportive healthcare workers with basic information on chronic myeloid leukemia (CML) which they can relay to patients. They are not to take over the role of the physician but simply emphasize key messages, especially in areas where we do not have patient groups or reach. Last month, Max presented the first Workshop for Assistive Health Care Workers!

The two-hour session was attended by 25 nurses from the oncology centre in Windhoek. The workshop explained the journey of a CML patient and how in the current situation the patients have limited access to information.

I asked the nurses, “As you are the ones spending the most time with CML patients, do you talk with them about the disease – give them info or answer questions?” The answer shocked me:

“We are afraid to speak with the CML patients because we don’t know what to say to them and do not have answers to their questions. We do not know anything about their disease.”

By using the booklet, which uses basic language and illustrations, I explained the what, how, why, and what now about CML. This is the exact information that we would share in a patient education workshop in the same language used by patients.

The result and feedback following the session was very supportive! Several nurses expressed gratitude in the training and felt empowered to assist CML patients. The head of nursing at the clinic requested a follow-up session as there was an additional 40 nurses who wishes to attend the session and those in attendance also wanted more information!

We will be presenting this workshop in other Southern African countries over the next few months, Zimbabwe, Botswana and Mauritius and then start with the follow-up workshops. We also asked the nurses to assist in identifying patient leaders and in the establishment of a patient group within their region.

I am really excited and grateful that we found this “link” between patients and information. It is a fantastic opportunity to educate and empower people who are in positions to educate and empower patients, where we do not have other mediums to do so. Stay tuned to learn how this project develops – this is just the beginning!

Go on the Patient Journey

Join Tony as he shares his story of learning about his cancer, gaining access to life-saving medication, and connecting with a community of care.
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