We Are Jumo Health: Jeff Pfohl
An Interview with Jeff Pfohl, Senior Director of Strategic Solutions
Great companies are made up of great people. Here at Jumo Health, our most valuable resource is our team. We are a collective of medical folk, product people, designers, and storytellers that share a common goal to change health care today. Through our We Are Jumo Health series, we will introduce you to the dedicated people who are the heartbeat of Jumo Health.
This month, we’d like you to meet Jeff Pfohl, who has been at Jumo Health since February 2019. Jeff lives in Warwick, New York.
What led you to Jumo Health?
Rick Scorzetti and I worked together in the past. I saw that he joined a company called Jumo Health and I sent him a congratulations note. He replied back and let me know he is looking for a few good people. It did not take long after that. I met with Sindy, Kevin, Columba and the team and saw the wonderful passionate work Jumo health was doing, especially with kids.
What do you like most about working in health care?
It is not often your work can truly make a difference in someone’s life. We have so many stories here of our collective ability to impact families in a positive way. The story of Damon, a little boy with bone cancer really hit home.
What is the most important thing you’ve learned in the last five years?
As I move on to middle age:) I can’t but help to appreciate a quote by Abraham Lincoln: In the end, it’s not the years in your life that count. It’s the life in your years.
Finish this sentence “I am happiest when…”
We live in the country. Our home has large windows in the family room. On Sunday morning my wife Kristi and I get up early, sit in the family room, and simply talk over a hot cup of coffee.
What are some hobbies or interests you have outside of work?
Exercise is great for both my physical and mental health. I enjoy weight training, boxing, and hiking. We tend to enjoy live concerts, all kinds of music (to include cheesy 70s stuff) and many, many family get togethers. I also do quite a bit of volunteer work. Since 2007, I along with some good friends have run a charity to provide Christmas presents for needy kids in Appalachia.
Understanding Osteosarcoma: Damon's Story
This blog post was written by Brian Billeck, Damon’s father
Damon was diagnosed with Osteosarcoma in January 2014, at the age of 9, after his mother Lisa hugged him and felt an unusual lump on his left arm. Osteosarcoma is rare, but is the most common form of bone cancer in children and teens. While it can develop on any bone, it is usually found at the quickly growing ends of the “long bones” such as those in the arms and legs. In Damon’s case, the enormous tumor had destroyed most of his left humerus (the upper arm bone between the elbow and the shoulder).
Osteosarcoma grows quietly. Usually, by the time you find it, it may be too late. Despite the damage from the tumor, Damon underwent limb-salvage surgery in April 2015 (a complex operation which removes as much cancerous tissue as possible without amputating the entire limb), followed by ten months of highly intensive chemotherapy. After treatment Damon was N.E.D. (No Evidence of Disease). However, just a few months later, scans showed the cancer returned to his arm. This time the only option was amputation.
When Jumo Health reached out to Damon and asked if he would like to be featured in a comic about Osteosarcoma he jumped at the chance. When the first draft arrived, Damon was so nervous. When he saw the cover art depicting him as a One-Armed Superhero “American Boy” he started crying! He was so happy they kept him who he was. It was important to him that other kids see that even if cancer took your arm, or leg or whatever…it could never take your spirit, your strength, or your family.
Understanding Osteosarcoma is a journey that takes Dara & Damon through the body and educates them in a manner easy to understand. It’s a phenomenal way to teach children. The journey ends with a family hug as they fight together!
Damon passed away from Osteosarcoma April 3, 2018, at the age of 13. He was surrounded by his family and holding the hand of his twin sister. Damon had a saying:
“Strength isn’t about how much one can lift.
Strength is about how much one can lift others.”
Damon’s parents and family continue to raise awareness for Childhood Cancer and spread Damon’s positive message.
Jumo Health Responds to FDA Draft Diversity Plan Guidance
In April, the FDA published draft guidance for sponsors on how to create a “Race and Ethnicity Diversity Plan” that will help to ensure they enroll proportionate numbers of participants from underrepresented racial and ethnic populations in their clinical trials.1 The agency asked for industry feedback on the document by June 13.
The FDA reported that Black or African American, Hispanic/Latino, Indigenous and Native American, Asian, Native Hawaiian and other Pacific Islanders, and other persons of color are often underrepresented in medical research, even in studies of diseases that may be more prevalent among their population. For example, COVID-19 infects Black and Hispanic people at 3.5 times the rate of the general public.
The reasons for this reduced participation are multi-faceted and include lack of access to healthcare, difficulty reaching clinical research sites, and an inherent mistrust of the healthcare system based on historical abuses, such as the USPHS Syphilis Study at Tuskegee, the Diabetes Project with the Havasupai Tribe, and the treatment of Henrietta Lacks.
But it is vitally important that clinical trial populations are truly representative of the general population to make sure that any new products approved by the FDA are safe and effective for everyone who might want to use them. For example, the FDA referenced variations in skin pigmentation, which exist across diverse populations, and can impact the performance of pulse oximeters (which measure oxygen saturation levels in the blood) and some devices that detect skin cancer.
Shared Perspective
Jumo Health submitted a formal response to the FDA2, applauding the Agency’s comprehensive efforts to improve the enrollment of racial and ethnic populations in clinical trials through study design, education, and continuous process improvement with real world data.
We also fully support the Agency’s efforts to define – indeed redefine – diversity beyond race and ethnicity to include other underrepresented populations defined by:
- sex
- gender identity
- age
- socioeconomic status
- disability
- pregnancy status
- lactation status
- co-morbidity
It is critical to ensure that the clinical data collected and analyzed can provide complete and accurate conclusions that represent the entire U.S. population.
Participant Education
In our response, we commended the Agency for underscoring the importance of disease education “for all patients who are expected to use the medical product if approved.” But we also suggested that the FDA consider expanding this goal beyond disease education to ensure that resources are also available for potential clinical trial participants which explain:
- the informed consent/assent forms
- study protocol
- study objectives
- study requirements
These resources should be in a form that is understandable to someone of their age and culture. Providing accessible educational resources is a vital step in enrolling, and most importantly, retaining, participants in a study.
We must overcome the fact that 9 out of 10 adults are health illiterate3,4 and more than 50% cannot read above the 8th grade level.5 The industry is struggling to enroll and retain enough patients; 85% of all clinical trials fail to retain enough patients6 with 93% of all identified patients dropping out after informed consent.
At Jumo Health, we are addressing these challenges head on by developing highly visual, culturally sensitive educational resources in formats that are tailored to match the age and experience of our audience. This approach is imperative to ensure that our audience not only comprehends the information but knows what actions they need to take. We employ a wide range of media, including comic books, animation, virtual reality experiences and documentary-style videos to explain diseases, describe the clinical trial process, and tell patient stories. All our materials are developed by medical doctors, based on evidence-based, published research, and created in partnership with advocacy groups and community organizations.
We have developed education materials for patients and caregivers in more than 100 therapeutic areas, for all the different age groups, and in 92 languages and 76 countries. In fact, we have received institutional review board and ethics committee approval for hundreds of digital and print pieces, describing more than 200 conditions.
We have achieved this level of success by taking a highly inclusive approach, overseen by our internal and external Diversity, Equity, and Inclusion Committees. We collaborate with more than 180 advocacy groups and community organizations globally to ensure that we always represent authentic patient experiences. We also employ Community Engagement Teams, which are local action boards convened to review project materials and provide input on the design, voice and tone used. Those teams later introduce the finished materials to their local communities.
Conclusion
We wholeheartedly support the FDA’s efforts to ensure that sponsors have a Race and Ethnicity Diversity Plan in place from the early stages of their drug, biologic, and medical device development programs. This well considered approach will help to ensure that clinical trial participants are truly reflective of the general population and that medical products which are submitted to the FDA for review will be more safe and effective for all future users.
References
- FDA Draft Guidance: Diversity Plans to Improve Enrollment of Participants From Underrepresented Racial and Ethnic Populations in Clinical Trials
- Jumo Health’s response to the draft guidance
- Cutilli CC, Bennett IM. Understanding the health literacy of America: results of the National Assessment of Adult Literacy. Orthop Nurs. 2009 Jan-Feb;28(1):27-32
- Baedorf Kassis, S., S. A. White, L. Myers, C. Trudeau, and B. Bierer. 2019. Advancing health literacy in clinical research: Clear Communications for Every Participant. NAM Perspectives. Commentary, National Academy of Medicine, Washington, DC.
- U.S. DHHS: America’s Health Literacy: Why We Need Accessible Health Information
Clinical Leader: Considerations For Improving Patient Recruitment Into Clinical Trials
We Are Jumo Health: Juliet Taylor
An Interview with Juliet Taylor, Manager of Sales Enablement and Contracting
Great companies are made up of great people. Here at Jumo Health, our most valuable resource is our team. We are a collective of medical folk, product people, designers, and storytellers that share a common goal to change health care today. Through our We Are Jumo Health series, we will introduce you to the dedicated people who are the heartbeat of Jumo Health.
This month, we’d like you to meet Juliet Taylor, who has been a Manager, Sales Enablement and Contracting at Jumo Health since July 2021. Juliet lives in Raleigh, North Carolina.
What led you to Jumo Health?
I have always been passionate about scientific literacy & communication. As an undergraduate and graduate student, I worked on multiple research projects and internships focused on education and public understanding of scientific concepts. Jumo Health was a great fit for me and I love working for a company that prioritizes health literacy and patient understanding.
What is the thing you like most about working in health care?
The true commitment of my coworkers to creating accessible and fun educational resources. Everyone’s primary goal is always “What’s best for the patient?” I love working on a team that is so dedicated to our mission.
What motivates you?
I am most motivated when others are relying on me. I love putting in the effort to make someone’s day better or easier.
What is the most important thing you’ve learned in the last five years?
The most important lesson I have learned is that no one is an island. Everyone needs help, support, and a sense of community to live their best life. In the last few years I have really learned to value relationships with friends, family, and coworkers.
What are some hobbies or interests that you have outside of work?
I am a great cook and love creating new recipes. I am also on a weightlifting team. Most importantly, I love to go on adventures with my 2-year-old dog, Izzy!
5 Tips to Improve Patient Education
WHAT IS PATIENT EDUCATION?
Patient education is a critical part of patient care. It includes: instructing patients on follow-up care, prevention, and how to take a proactive role in their own healthcare. Effective patient education can lead to better outcomes and should be a goal of every medical provider.
Unfortunately, patient education is not always easy. Health information is complex, and patients can easily become confused. Without the proper educational resources, doctors, clinical trial professionals, pharmaceutical reps, and other health educators may find teaching patients about medical issues difficult.
To help encourage patient education, we have put together our top five strategies for educating patients effectively.
5 Tips for Better Patient Education
1. Demonstrate Interest and Establish Trust
When teaching patients about medical issues, it is important first to establish trust. Show them that you are interested in more than just their physical well-being. Creating a rapport with your patients will make it easier for them to hear your medical advice later, making it less likely that they will tune out your words.
Some ways that you can demonstrate your interest in patients include:
- Ask how things are going with their work, hobby, home life, etc.
- See if they have been anywhere interesting or if they have upcoming travel plans.
- Find out if they have read any good books or watched any good TV shows or movies recently.
Patients who feel cared for and heard are more receptive to education. In addition, investing a minute or two of non-medical conversation can help put patients at ease, encouraging them to open up more about any problems, medical issues, or worries they might be facing. It can even give you clues about your patient’s preferred style of learning, which leads us to the next strategy.
2. Adapt to the Patient’s Learning Style
Even patients who want to learn may have difficulty doing so if the information is not presented in a way conducive to their style of learning. Barriers can include language, culture, level of formal education, and even misinformation that a patient received from a family member, friend, or the internet.
Some patients will already know what kind of learner they are (visual, auditory, etc.) and might be able to tell you how they learn best. Remember: Teaching patients requires patient teaching. Taking the time to learn how your patients learn will improve patient outcomes in the long run.
3. Use Innovative and Age-Appropriate Education Materials
Patient education materials come in all forms. Newer, more innovative formats are finding their ways into the health education space, giving patients more opportunities to learn in fun and unique ways. Some of these new formats include comic books and podcasts.
Traditional pamphlets or videos are often used in the waiting room. These do have some value, but fresh, individualized approaches to patient education are more likely to be effective in the long run.
Pro tip: Check out Jumo Health’s collection of innovative health education resources.
4. Ask Patients to Explain Information Back to You
Far too often, patients will say that they understand what their doctor told them—even if they really don’t! The reasons why a patient may say they understand something when they don’t are numerous:
- They might be in shock or overwhelmed by a diagnosis and just want to leave.
- They might be too embarrassed to admit that they don’t really understand it.
- They might genuinely think they understand it, but realize later they forgot some important piece.
One way to prevent patients leaving before they fully grasp what you are telling them is to have them repeat the information back to you. When doing so, you can correct details they get wrong or fill in gaps, helping to reinforce the information.
If you suspect a patient is simply repeating what you said without actually understanding it, you can also ask him or her to re-word it in a way that would help a family member or friend understand the information.
5. Educate the Patient’s Family or Caretaker
Two minds—and two memories—are better than one. Inviting a family member, friend, or caretaker to join the education session will help to ensure retention of the medical information. This is especially important for young children or individuals who have a learning disability or special education needs.
Inviting a caregiver to join the conversation can create a feeling of support and community. This may be especially important at a decision-making time, since then there will be at least one other person who understands the issues at hand.
Why Is Patient Education Important?
Patient education is not just a nice thing to do—it actually improves patient outcomes. According to a study published in the Annals of Internal Medicine, hospitalized patients who receive individualized instruction booklets and instruction from a nurse are 30% less likely to return to the hospital within 30 days of discharge.
Patient education doesn’t just provide patients with useful information. It can have an appreciable, positive impact on their health. Contact us to start the conversation about improved patient education.
What is Health Literacy?
Introduction
Health literacy is much more than being able to read. Health literacy is defined by the CDC as “the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.” In other words, it’s the ability of people to read health-related information, understand it, and act on it.
Low health literacy is very common among adults in the US. According to the first ever national assessment of adult literacy, only 12% of adults have adequate health literacy skills. This means only 12% of adults in the US can navigate our complex health system, engage in medical discussions, and fully participate in managing their health.
Key statistics:
- More than 80% of health information provided in a doctor’s office is forgotten before patients or parents get home.
- More than 50% of the recalled information is remembered incorrectly.
This is a problem that affects the entire population, but certain groups are more heavily impacted:
- People living below the poverty level.
- Black, Hispanic, American Indian/Alaska Native, Hispanic, and multiracial people.
- People without a high school education.
- Non-native English speakers.
- Adults over the age of 65.
Poor health literacy results in negative health outcomes. Low health literacy is associated with high rates of hospitalization, poorer self-reported health, and higher healthcare costs.
How to Promote Health Literacy in Written Materials
- Maximize white space. Difficulties with reading are often more to do with the look and layout of the text versus the content itself. Short, clearly separated chunks of text that maximize the amount of white space on a page are best.
- Consider line spacing. Spacing between lines also impacts readability of text. If lines are too close, readers may drop lines. If too far apart, how the lines relate to each other may be unclear. Line spacing (otherwise known as leading) of 2 pt is recommended for a normal 12-point type size.
- Use upper- and lowercase letters. A combination of upper and lowercase is easier to read than upper case only. To show the importance of text, it’s better to use bold type rather than overuse upper case.
- Break up long text with illustrations. Illustrations break up the density of text and should, if possible, come at the end of paragraphs or sentences, rather than in the middle of them.
- Add headings and section titles at the top of each page. The look of the layout of pages is also important. It’s recommended that headings and new sections are located at the top of pages. Sentences and paragraphs should not run into the next column or page.
- Use thicker paper and avoid dark backgrounds. Paper should be thick enough to avoid shadowing from the text over the page. Darker colors are difficult backgrounds for reading.
- Write in short sentences. It is best to write sentences with one main point per sentence. Use full stops rather than semi-colons.
- Try to write at a sixth grade reading level. According to the American Medical Association (AMA) and the National Institutes of Health (NIH) recommendations, readability of patient education materials should not exceed a sixth grade reading level. The average reading skill of U.S. adults is at the eighth-grade level.
Simplify Medical Language
At Jumo Health, without compromising the medical accuracy of the information delivered, we avoid unnecessary medical jargon, using easy-to-understand words with fewer syllables.
For example, instead of:
- Hypertension: high blood pressure
- Investigations: tests
- Cardiovascular: heart
- Pulmonary: lung
- Administer: give
- Approximate: about
Avoiding polysyllabic words, in addition to keeping sentences as short as possible, significantly lowers the readability scores of written materials.
Combine Text and Illustrations
Our products use a combined visual and verbal format to enhance comprehension of the educational content. This helps to ensure that those with lower readability scores can still learn from the illustrated content.
For example:
- Explaining tests that may take place during a clinical trial (adults):
- Explaining tests that may take place during a clinical trial (children):
- Explaining complex conditions and how they impact the body:
Conclusion
Efforts to improve health literacy have a number of benefits. They lead to improved health knowledge and self management of long-term medical conditions, positive lifestyle changes, and a reduction of burden on healthcare services. In addition, health literacy is a significant mediator of social determinants of health, and health literacy interventions have the capacity to reduce health inequalities.
References:
- Centers for Disease Control and Prevention. What is Health Literacy [webpage]? Available at https://www.cdc.gov/healthliteracy/learn/index.html. Accessed on May 9, 2022.
- Kutner M, Greenberg E, Jin Y, Paulsen C. The Health Literacy of America’s Adults: Results from the 2003 National Assessment of Adult Literacy (NCES 2006-483). Washington, DC: U.S. Department of Education, National Center for Education Statistics; 2006.
- Aaby A, Friis K, Christensen B, Rowlands G, Maindal HT. Health literacy is associated with health behaviour and self-reported health: a large population-based study in individuals with cardiovascular disease. Eur J Prev Cardiol 2017;24(17):1880–1888.
- Bass, PF. Three steps to boost health literacy. Contemporary Pediatrics. Jan 2018. http://www.contemporarypediatrics.com/modern-medicine-feature-articles/3-steps-boost-health-literacy
We Are Jumo Health: Ryan Mercer
An interview with graphic designer, Ryan Mercer
Great companies are made up of great people. Here at Jumo Health, our most valuable resource is our team. We are a collective of medical folk, product people, designers, and storytellers that share a common goal to change health care today. Through our We Are Jumo Health series, we will introduce you to the dedicated people who are the heartbeat of Jumo Health.
This month, we’d like you to meet Ryan Mercer, who has been a graphic designer at Jumo Health since July 2020. Ryan lives in Wilson, NC with his wife and three children.
Why did you join Jumo Health?
I was introduced to Jumo through my sister-in-law (Ashley McGee) when she hopped on board a few years ago. She had just traveled to NY to meet everyone for the first time and was telling us about it at our family Christmas party. She glowed when she told us about the culture at Jumo—the shared passion to make health literacy more accessible. (I’ve heard the scholarly term for this is Collective IQ.) Though I didn’t have a background in healthcare, her excitement was infectious, and when an opportunity to join the design team opened up several months later, I jumped at the chance.
Describe a day in the life of your job.
One of the most exciting things about working at Jumo is the variety of products we offer. I could be working on the layout for a study’s website, tweaking comic book text, and designing logo concepts all in the same day. Each product is important and helps tell the patient a story. Either of the study they may be joining, the condition they suffer from, or maybe even the medicine they’ll be taking. No one that I’ve worked with, from client services to editorial to design takes this lightly. Everyone is passionate about delivering the best possible work to tell the best possible story. As a design team, we meet several times a week via Zoom to go over work, collaborate, and just get to know each other. Joe Brady’s done such a great job at creating an environment for us designers to thrive in.
What motivates you?
When we sit down to design something, we try to keep in mind the end user experience. Who will be reading this and how can we make this easy to understand and visually interesting for people from a wide range of backgrounds and cultures? It’s a powerful thing to know that what we create can help affect people’s medical decisions.
Specifically, my faith in Jesus is what motivates me. He’s the ultimate Healer, and I feel honored to be a small part of so many people’s healing journeys.
What are some hobbies or interests you have outside of work?
My family is my world! My wife, Brittney, and I have three awesome kiddos, Hannah (3), Micah (2), and a little girl due in late July. Life is fast and fun in the Mercer house! We do everything together and I wouldn’t trade it for anything.
Besides that, I’m pretty obsessed with typefaces, coffee, sports, and old Star Wars novels (typical nerdy, graphic designer-y things).
Raising Awareness for World Sickle Cell Day
Raising Awareness for World Sickle Cell Day
Today, we celebrate World Sickle Cell Day, a chronic condition which affects approximately 100,000 Americans and occurs in 1 out of every 365 Black or African-American births.1 We had the unique privilege of speaking with Jew-E’L Darbone’, the founder and CEO of Bold Plus+, a community based nonprofit organization dedicated to sickle cell awareness, advocacy, and empowerment. Living with sickle cell type SS, Jew-E’L shares her story about managing the condition, the challenges she has faced, and the impact her voice has had on countless others.
“I was four when I first realized I was different. I went to play with my friends in the sprinkler system and the cold water sent my body into one of the worst [sickle cell] crises that I’ve ever had, ” Jew-E’L recalls. “That was really impactful for me at that young age to realize I can’t do what all my friends are doing.”
Sickle Cell Disease Explained
Sickle cell disease (“SCD”) is a group of inherited red blood cell disorders that affect hemoglobin, a protein that delivers oxygen to cells throughout the body; In sickle cell disease, hemoglobin isn’t made correctly. The hemoglobin forms long chains inside the red blood cells making them curved (or, “sickled,” hence the name) and stiff. These cells, then, can not flow smoothly through the bloodstream, and get stuck, which slows down or blocks blood flow to different parts of the body. This can cause problems in the body such as a blockage of blood flow to the spleen, brain, and lungs, and severe pain. A hallmark of this condition is recurrent, acute, and chronic pain that often requires immediate management and emergency hospitalization.2 When these things happen all of a sudden, it’s called, as Jew-E’L mentions above, a sickle cell crisis.
The Challenges of Living with a Chronic Illness
Diagnosed at birth, Jew-E’L describes the challenges she faced as a young child recalling, “it was very, very isolating. I thought I was the only one in the world that had sickle cell disease and I didn’t have any family [members] who could understand or empathize with me. I really didn’t have any friends or anything like that.” Along with the physical burden of managing a chronic illness, it can also have an effect on a person’s mental health. Evidence suggests that depressive and anxiety disorders are much more prevalent among medically ill children and adolescents when compared with the general population.2 In one study of SCD, 40% of the participants met the criteria for depression.2
Jew-E’L notes, “I dealt with a lot of mental health issues. I dealt with a lot of suicidal thoughts and different things like that.” For Jew-E’L, the opportunity to attend sickle cell camp and establish a strong network of peers was a turning point. She explains, “sickle cell camp really saved my life because I found my tribe. I thought, wow, all these kids are dealing with the same issue that I’m dealing with and they’re just as unique as I am. They’re all different, we all deal with different issues, there’s no two cases of sickle cell that are alike. They call us snowflakes because each one of us is totally different. But, we all go through the same struggle.”
Finding Support and Resources
Access to educational resources are not always readily available, especially in traditionally underserved communities. For Jew-E’L, the first educational tool she received about SCD was at camp when she was 11 years old. “I wish that I had more doctors that spoke to me and not so much directed everything towards my mom. I wish they would have prepared me to become my own best advocate. I really feel like I was late to the game, like, I was a late bloomer when it came to taking care of my own health care decisions and using my voice to speak up for myself,” shares Jew-E’L.
When reflecting on what she wants to see for patients with sickle cell disease, Jew-E’L states, “I wish more doctors would approach the whole patient and not just treat a diagnosis. But actually the entire person — from the mental to physical, to dealing with every aspect of the person and not just the diagnosis of sickle cell disease.”
Becoming an Advocate
Finding strength and support from the sickle cell community is part of what drove Jew-E’L to start Bold Plus+. When asked about her biggest support, Jew-E’L explained, “It’s the strength of our community, being able to really trust one another, to find strength in each other, and be inspired by one another.” Jew-E’L’s social media community reaches over 5,000 people, giving people with sickle cell disease the opportunity to connect and share knowledge and resources. While Jew-E’L didn’t have this type of online support network growing up, she is working hard to ensure all patients with sickle cell have this resource moving forward.
So today, we celebrate Jew-E’L and her network of sickle cell warriors who fearlessly share their stories in an effort to help improve the journey and lives of other patients with sickle cell disease.
At Jumo Health, rare diseases, such as sickle cell disease, is an area where we have dedicated considerable energy and effort. To date, we have provided sickle cell disease resources across 27 different countries and in 25 languages. Our mission is to ensure that regardless of age, educational attainment, or socio-economic status, patients and their entire care circle can have access to information they can understand and act upon — whether it be at diagnosis, during treatment regimen, or while participating in a clinical trial. To learn more about our solutions, visit blog.jumohealth.com/solutions. To access our sickle cell resources, click here.
We are so appreciative of Jew-E’Ls time talking with us and her passion to serve the community that we are providing a 20% discount off all of our SCD resources all weekend long!
About Bold Plus+
Bold Plus+ is a community based non profit organization dedicated to sickle cell awareness, advocacy, and empowerment. You can follow them on Facebook and Instagram.
Sources:
- Centers of Disease Control and Prevention. Data & Statistics on Sickle Cell Disease. Accessed June 18, 2020. https://www.cdc.gov/ncbddd/sicklecell/data.html
- Benton, T et al. Anxiety and depression in children and adolescents with sickle cell disease. Curr Psychiatry Rep. 2007. 9(2):114-21.
The Impact of a Cancer Diagnosis on the Patient and the Entire Care Circle
CELEBRATING NATIONAL CANCER SURVIVORS DAY
Today we celebrate National Cancer Survivors Day. As we honor the lives of those who have battled cancer, we recognize the impact a cancer diagnosis has on the entire care circle — in some cases, inspiring those people to make impactful change in the lives of future patients. This piece shares the stories of just two in a sea of individuals who have confronted and beaten cancer.
Jen, an emergency room nurse for 15 years, still remembers vividly the day she was diagnosed with nasopharyngeal carcinoma. “As soon as [the doctor] put the scope in my nose… his entire face changed. And, it was at that moment, I knew I had cancer.” From that moment on, it was a non-stop road to recovery — assembling her care team, Jen worked tirelessly to research her condition, go to her treatment, and deal with its grueling side effects. Jen continued, “I didn’t tell anyone [when I was first diagnosed]. I went straight into nurse mode… I wanted to know all the data. How do we treat it? How do we beat it? I wanted to know the survival rates. I wanted to know everything. I couldn’t get in my feelings about it — I went straight into ‘what do I need to do next’… straight into fight mode.”
Shoby tells a similar story when her brother, Yadev, was diagnosed with Acute Lymphoblastic Leukemia (ALL) when he was one year old. “I still remember the moment the results were being [shared with] my mother. I was just outside of the room playing with the toys provided by the hospital… something didn’t seem right as the doctors had a somber look on their faces. It wasn’t until they had left the room that I went in to find my mum crying in hysterics and explaining it over the phone to my family.” Being nine years old at the time, she had only heard the word cancer in association with the word death, so she “instantly thought of the worst case scenario — that my brother would only have a matter of time to live.”
Shoby’s mother, Jan, noted, “When [the doctors] left the room I hugged my baby so tightly and cried with my tears dripping all over his baby gown. I was so terrified that my child was going to die and I could not do anything about it. I realized at this point that I need[ed] to get a grip and deal with this head on. Coming from a big Asian family who are extremely tight knit, I called my family and my cousins. Within moments, all of them were at the hospital and my family overtook the ward.”
Common Challenges Faced by Families Affected by Cancer
Studies have shown that patients face many challenges while managing a cancer diagnosis, including financial, social, communication, and logistical barriers.1 In one study, researchers found that problems with medical communication and lack of social support affected 50% of the patients.1 Such examples include reluctance to ask questions or share problems with the medical team.1
These barriers were also experienced by both Jen’s and Shoby’s families. Jen describes how her cancer case was unique and required a tremendous amount of her time and self-advocacy. “One of the biggest challenges during treatment was navigating the process. While I was ok because I’m a nurse, other people might not be,” said Jen. “For somebody who doesn’t know anything about health care, I can imagine them getting so lost and so overwhelmed in the system.”
The Need for Educational Resources and Support
Shoby also expressed feeling lost and confused, explaining that her brother’s diagnosis was not explained to her in a way she could understand. “Although I can vaguely remember the doctors trying to explain what was wrong with my brother, my understanding of his cancer was that it was blood related, as it was all too technical for me at the time. I thought that his blood was poisonous. It wasn’t until my aunt Sindy… gave me a book with Medikidz characters explaining Leukemia that I got a better understanding of what the cancer was.” When asked what resources she wished she had when her son was diagnosed, Jan said, “I wish that there were some simple books or pamphlets I could have been given to know about the disease, books to explain to my daughter what her brother was going through and what she should be expecting.”
In addition to the communication and logistical challenges they faced, their stories also highlighted how a cancer diagnosis not only affects the patient, but the entire care circle. Jan expressed the guilt over her son’s diagnosis, “I felt as though I was the cause of his sickness and that my genetics contributed to his disease. I questioned whether I could have done something to avoid this — was it because I heated his milk in the microwave? Was it because I didn’t feed him the right foods? For my daughter [Shoby, who was attending school], I could not focus on her and her homework.” Shoby explained, “I think the biggest challenge for me as a kid during the time was feeling lonely. At the time, I felt as though my brother always got all the attention and I felt left out, I wouldn’t have anyone attend my school plays, or drop me off on my school trips.”
Jen also noted how her cancer required non-stop support from her family — taking her to all her appointments, setting up a fundraiser to help with costs, and having her sister sleep in her room every night to make sure she was okay. “I would have never survived without that support,” Jen said.
The Road Ahead
The stories of Jen, Shoby, and Jan all speak to how a cancer diagnosis marks one’s life, and how the impact can be the catalyst of change. At Jumo Health, many of the team members have a personal medical story that led them to the field of health care. In fact, for two team members, it was a family cancer diagnosis that led them to careers in health care. For Kevin Aniskovich, President and CEO of Jumo Health, he started his career in health care when his mother was diagnosed with cancer. For Sindy Nathan, Area Vice President of Strategic Solutions, it was her family (Shoby, Yadev, and Jan) that inspired her career trajectory — making her want to bridge the communication gap and provide resources that explain medical conditions in a way the entire family could understand. For Shoby, the frequent trips to the hospital during her brother’s treatment and seeing the work the doctors did to save her brother’s life inspired her to give back. She is currently studying to get her Masters in Global Health. “I feel as though it is my way of giving back to the community,” she said.
When asked about what they would recommend to other people affected by cancer, they spoke to the need for support and talking with other people with cancer. As Jen said, “[Patients with cancer] are literally the only people on planet earth that know what you are or are about to go through. Not the doctors, not your friends, not your family, not your therapist, not your coworkers. Other cancer patients — those people will be your best ally.”
So today, we celebrate the lives of those who have been affected by cancer, recognizing their stories of triumph, loss, perseverance, and resilience. Thank you to Jen, Shoby, and Jan who fearlessly shared their stories so that others going through a similar circumstance can know they are not alone.
It’s stories like these that led to the founding of Jumo Health and that keep us striving to provide authentic, relatable resources during the most pressing times. At Jumo Health, we provide age appropriate educational resources for patients and their care circle for use throughout their medical journey. We work to ensure that regardless of age, educational attainment, or socio-economic status, patients and their entire care circle can understand and act upon a medical diagnosis and treatment plan. To learn more about our solutions, visit blog.jumohealth.com/solutions. Find more information about our Oncology resources, here.
Source:
1. Harden S et al. Patients’ barriers to receipt of cancer care, and factors associated with needing more assistance from a patient navigator. J Natl Med Assoc. 2011; 103(8):701–710.
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