Blog

The Beauty of Our Differences

Emily is a 7-year-old who loves to dance, draw, dress up, and pet furry animals. She eats, plays, goes to school, and experiences joy and sadness just like the rest of us. But because Emily can at times get lost in her own world, stress over changes in routine, and become overwhelmed with her emotions, society calls her atypical.

A neurotypical person is defined as “an individual who thinks, perceives, and behaves in ways that are considered the norm by the general population.” What makes something normal? Is it just because it’s what everyone else is doing? Why is someone strange just because they do things in a way we don’t understand? How boring and unimaginative life would be if we were all the same.

Emily was diagnosed with autism spectrum disorder (ASD) at age 3. Family members noticed the signs, but I hadn’t. She was my first child and I thought she was wonderful. I didn’t know what was typical and what was not. I was also in denial. Emily had already been diagnosed with type 1 diabetes at 13 months old. I wasn't ready to face a diagnosis of yet another chronic condition.

Emily’s therapy began during COVID lockdown. While others were learning new skills and how to bake bread, I was helping her learn how to communicate and retrain her brain. While others were getting physically fit, I was physically restraining my child to stop her from banging her head against the floor during a meltdown.

Words escape me when I look at the sweet, funny, social girl Emily has blossomed into. I’m beyond proud. She’s worked so hard to come so far, but it breaks my heart when I see her struggle to keep her composure. Emily can still become upset by crowds and loud sounds, but she can also sing a song in perfect pitch after hearing it only once. Emily may not be neurotypical, but she is brave, resilient, creative, and driven. She weeps when she is moved by music. Call that peculiar? Atypical? I call that beautiful.

by Ryan Zanardi

Why Health Literacy Matters & 3 Tips to Help You Bridge the Gap

Every day, thousands worldwide find out they have a disease or a health condition or disease that requires care. And each day, more and more people don’t get the care they need because they don’t understand what they have or their options regarding treatment and management. When diverse populations aren’t included as participants in clinical trials, knowledge about the efficacy of a treatment can get skewed toward population or group over another. Without diversity, doctors can’t fully understand why a treatment works in one population but differently in another. Information like this can significantly affect how doctors treat patients.

This is why health literacy matters.

Not familiar with the term “health literacy”? Here’s a simple definition.

Health literacy means you:

• can get the medical information you need.
• can read the information provided.
• can understand the information.
• can make informed health decisions.
• can follow instructions for the treatment prescribed.

At Jumo Health, we believe everyone deserves access to relatable medical resources regardless of age, language, culture, or education. We also believe no one should need a Ph.D. or M.D. to understand what’s happening in their bodies or what will happen in a clinical trial they’re considering. Yet 88% of adults aren’t health literate, and 50% can’t read beyond an 8th-grade level. Here’s another scary statistic: 65% of people say they receive resource materials they can’t understand.

Unfortunately, 88% of adults aren’t health literate, and most of the educational materials they receive are written at a 10th-grade reading level or higher. Yet, the National Institute of Health (NIH) states that medical educational materials “should not exceed a 6th-grade reading level.” Also, in a recent survey by Market Media U.S., more than 90 million people in the United States alone struggle with understanding and using health information.

Combine that with forgotten information, Dr. Google, and advice from friends of friends, and it’s a perfect storm of confusion, fear, and misunderstandings. After all, a patient may be overwhelmed by a new diagnosis or the sheer volume of information they need to process to decide whether to join a clinical study or start a new treatment. In addition, patients may prefer to digest the information in a particular format, be it direct discussion, learning online, watching a video, listening to a podcast, or reading a brochure. Therefore, creating materials that are cognizant of an audience’s education level, cultural background, socio-economic background, and age is essential.

Having materials that are easy to understand is so important because, for clinical trials, misunderstandings can derail the research before it begins. If patients don’t understand what researchers are studying or what will happen during the study, they won’t join, much less stay enrolled. And if patients don’t enter these studies, new medicines can’t be researched to see if they’re safe and can help.

According to a recent article published by the CDC this past spring, “When patients are provided with culturally and linguistically appropriate information, they are empowered to create healthier outcomes for themselves and their communities.”

So, how can we bridge the gap between a doctor’s knowledge and a patient’s understanding? Below are three easy ways to help you do just that.

3 Ways to Increase Patient Understanding:

1) Write resources and materials that fit your target audience’s age, reading level, and cognitive level.

• Make sentences easy to read and straightforward.
• Use bullets wherever possible.
• Use icons, infographics, or illustrations to help drive home your message visually.
• Pay attention to word counts, syllable counts, and your use of familiar words.

2) Consider the target audience’s preferred language and translate the materials and resources into that language.

• Invest in a reputable translation service to ensure the translation of your content is correct.

3) Create a simplified Informed Consent Form.

• Avoid medical jargon.
• Explain things simply.
• Keep sentences short and to the point.

Interested in learning more about health literacy and how we do what we do? Visit blog.jumohealth.com/contact to get in touch!

by Ryan Zanardi

Sotos Syndrome Awareness Day: The Schoch's Story

September 6th is Sotos Syndrome Awareness Day — and like with many rare genetic disorders, Jumo Health is committed to raising awareness and providing accessible education. I have seen the countless benefits of what bringing a deeper understanding to families and caregivers of those with Sotos Syndrome can truly do.

In our home, the bonds of love and care are woven deeply with unending support. As a big sister to my incredible brother, Thomas, and the daughter of a dedicated nurse, every day has been a unique journey filled with medical challenges, encouragement, and triumphant moments.

My mother, a beacon of strength, cares so compassionately for others in her role as a nurse. Yet, her dedication extends far beyond the hospital walls — it’s a cornerstone of our family’s foundation. Growing up, I witnessed her juggle her demanding profession while ensuring that Thomas received the specialized care he needed due to his Sotos Syndrome. From administering medications to managing appointments, my mother’s expertise and love created an environment where Thomas could thrive despite his challenges.

In this backdrop of caregiving, my role as a big sister took on a special dimension. I became more than just a sibling; I became a partner in our family’s journey, supporting my mother and inspiring Thomas to reach for his dreams. Together, we embarked on a remarkable adventure with the Special Olympics. Since starting that journey in 2010, our family has been actively involved in fostering athletes with a wide range of abilities, championing inclusivity and celebrating the unique strengths each individual brings.

As Thomas navigated the unique terrain of Sotos Syndrome, the Special Olympics became a pool of empowerment. I vividly remember the first time he dipped into the water, determination radiating from every stroke. With each training session, I stood by the poolside, cheering him on through every lap — both in the water and in life. The smile that broke across his face as he touched the wall was a testament to his unwavering spirit and the boundless potential that resides within us all.

As I look back on my brother’s journey — a path filled with challenges, triumphs, and endless love — I’m reminded of the profound impact that we have on each other’s lives. My mother’s unwavering care, Thomas’s indomitable spirit, and my role as a big sister have converged in a way that I hope inspires others who are navigating the challenges of Sotos Syndrome.

Joining the incredible team at Jumo Health has been a transformative journey that has reignited my fervor for fostering understanding and compassion. As someone who has personally navigated the complexities of caring for a loved one with Sotos Syndrome, I’ve always held a deep-seated passion for increasing knowledge and recognition of rare conditions like these. Working at Jumo Health has provided me with a platform to amplify my voice and make a genuine impact. Every day, I get to contribute to the completion of educational resources that empower families, individuals, and communities to embrace differences and navigate the challenges with empathy. It’s as if my experiences as an older sister have found a purposeful home, and I’m fueled by the opportunity to inspire positive change.

by Ryan Zanardi

How to Create Your own Multimedia Library for Informed Consent

By: Camila Matheny,  Andrew Mackinnon, and Kevin J. Aniskovich

An often quoted analogy for recruitment into clinical trials is that of the ‘leaky pipe’. In this analogy potential participants drop out of the recruitment funnel at every stage in the process from identification, pre-screening, consenting, screening, randomisation and trial completion.

Research in 2020 ^[1] showed that of 100 participants identified for pre-screening, only 8 will be randomized, and only 7 will complete the trial. Given that  a recent review with the Medable Patient Champion Network (PCN) highlighted that the paper consent process was often considered as ‘intimidating’, the fact that up to 80% ^[2] of potential participants are lost during the consent process is not surprising. Metrics such as these highlight the importance of being able to provide a potential participant with the details of a clinical trial in a manner that both engages and educates them. This helps ensure that their very first experience with the trial, and at times the research facility, sets the tone for a positive trial experience.

Once enrolled into a clinical trial, the process of educating a participant and ensuring the consent form is understood, has a direct impact on their retention. Research from CISCRP ^[3] showed that 35% of participants that dropped out early from a clinical trial found the consent form difficult to understand, compared to only 16% of participants that completed their clinical trial.

With the broader adoption of digital informed consent, also known as eConsent, it is important to highlight some of the key benefits that this approach can bring to participant education. Let’s deep dive into the benefits digital Informed Consent with enhanced media can offer to the participant education: The ability to engage with participants more effectively will increase comprehension and overall satisfaction with the trial experience.

Research is showing that participants are happy to adopt eConsent as the route into a clinical trial. Results from a 2020 study^[1] across 940 participants who used eConsent as part of two protocols at Memorial Sloan Kettering showed:

• 83% of participants stated that eConsent was “Very Easy” or “Easy” to use
• 95% of participants would recommend the use of eConsent to other participants
• In both protocols, participants demonstrated higher levels of comprehension as measured through surrogate marker scores.

As the evidence shows, enhanced multimedia has been proven to provide a better and more effective way for participants to learn about their responsibilities in the clinical trial. However, creating study specific videos each and every time a protocol is written is a time consuming task that can often present challenges to the study set up timeline. As a result of that, many sponsors are seeking guidance on how to create an effective multimedia library that is quick and easy to deploy, and also drives a better participant experience. The major interest is to understand what types of resources to include, such as videos and knowledge-check questions, and to determine the most efficient strategies to incorporate these elements into their diverse portfolio of clinical trials studies.

Now that we have a more clear understanding on the benefits of eConsent, are there specific benefits of using multimedia or video in participant education?

“Deficiencies in health literacy and reading comprehension, together with issues of health equity and access, have caused widespread delays in enrollment and downstream drop out rates to be a source of pain for clinical research,” shared Kevin Aniskovich, President and CEO of the medical communications company, Jumo Health. Aniskovich continued, “one way to combat this issue is to ensure complex medical and legal documents can be transformed and presented in ways that patients can understand and most importantly, act upon. Use of storytelling methods, using animation for example, has emerged as the leading form of medical education medium at Jumo Health as we develop educational libraries for our pharmaceutical customers.”

When considering the use of animation as a medium in your library, it’s important to understand how the human brain processes information. Studies show that between 40% to 80% of what a person hears is immediately forgotten, and that 50% is recalled incorrectly. After three days, merely 15% is recalled correctly making verbal communication ineffective at best.

“Interestingly,’ stated Aniskovich, ‘the human brain processes images 60,000 times faster than text alone and research has proven that by using visuals as the basis in communications leads to an impressive 65% of information being retained after three days.”

Sponsors should look to evaluate their current informed consent process through a multimedia and patient education lens, concentrating in content that can be used across different studies as an economical solution to their upfront investment.

For example, creating a video library is an excellent way to answer basic questions related to topics typically not well known by first time trial participants such as what is an informed consent, trial responsibilities, requirements versus options, randomization and more. These videos can be created in many different languages and are a great way to add a flexible way for participants to learn about key concepts of a trial in a more engaging manner than offered by the traditional paper consent method.

Knowledge questions are another recommended another area of focus. Having a library of localized knowledge questions focused on common informed consent topics can allow sponsors reusability across trials and reduce the burden on individual study teams. These knowledge checks should be designed to facilitate a candid conversation between Dr and participant about the important topics prior to informed consent signature. The most recommended topics are around trial responsibilities, insurance coverage, data privacy, withdrawal or optional consent data storage.

Creative displays of the protocol schedule, or an interactive patient journey map, can also help participants to understand their requirements and responsibilities when on the trial as opposed to the traditional schedule of assessment tables that can be confusing, or even intimidating for a first time trial participant. Having these type of graphical images standardised in format, colour and structure can further assist a study team in quickly reaching a final eConsent template.

A hyperlinked glossary of terms is another great  feature to add to a multimedia library. Participants often find themselves overwhelmed by the sheer volume of information they need to comprehend, and even when written at the recommended grade 8 reading level, medical jargon will only further complicate the process. Providing a localized glossary with embedded hyperlinks, can help participants more effectively grasp the key terms and concepts associated with the trial, as well as offering a deeper review where a participant wishes to learn more. This offers a more comforting and comprehensible experience to the participants with the important concept of optionality introduced.

In summary, an enhanced multimedia library can be created with content focused both on improving the comprehension process for participants, and reducing the burden for sites. GCP requirements mandate that sites are entrusted with the duty to ensure participants are thoroughly informed throughout their enrollment in a clinical trial study. Utilizing a multimedia library for this purpose has been demonstrated as an impressively effective solution to fulfill this responsibility and can ensure that a participant’s first engagement with a clinical trial is filled with empathy and education rather than confusion and intimidation.

CAMILA MATHENY
EXECUTIVE DIRECTOR, DCT OFFERINGS

An expert in clinical trial operations, Camila works closely with pharma, biotech, and CRO customers to articulate the value of adopting and implementing digital technologies to deliver decentralized and hybrid clinical trials. As a member of the SCDM eSource Consortium, DTRA, and EFGCP, Camila leads with data, the driving force behind bringing new therapies to market. With over 15 years of clinical trials experience, a background in data management, and a passion for the latest cutting-edge technologies, Camila provides a unique combination of expertise to help guide customers towards a  better way to adopt and implement technologies the most impactful and sustainable way.

ANDREW MACKINNON
VP, GM, ECONSENT

As General Manager for eConsent, Andrew Mackinnon oversees the development of the eConsent product, as well as the implementation of eConsent in Medable studies, ensuring that Medable’s clients can run high quality, effective and efficient decentralized clinical trials. Andrew has 20 years of experience in managing clinical trials at large Pharma, Biotech and CRO companies, most recently as a Senior Director in one of Covance’s therapeutic area delivery groups and as Head of Business Performance. From his involvement in one of the earliest deployments of decentralized methodologies, he has been passionate about the benefits that this approach can bring in reducing the burden of clinical research on both sites and patients and looks to leverage his broad operational expertise to improve how this approach is utilized.

KEVIN ANISKOVICH
PRESIDENT & CEO, JUMO HEALTH

Kevin is the President and Chief Executive Officer of Jumo Health. In this capacity, Kevin is responsible for the strategic direction of the organization, playing primary roles in product development and global market positioning.

A serial entrepreneur, Kevin’s career in health care started when his mother was diagnosed with a rare disease and faced a dearth of understandable information about her diagnosis and care. Having most recently served on the market research side as President of Great Blue Research, Kevin was previously the Chief Innovation Officer of Sharecare, responsible for product strategy and operations of its service offerings directed to healthcare professionals and institutions.

Prior to joining Sharecare, Kevin was the Chief Innovation Officer of Remedy Health Media, responsible for strategic planning and product development for its digital assets. Kevin joined Remedy as part of its acquisition of Intelecare Compliance Solutions, a company Kevin founded and led as its Chief Executive Officer. At Intelecare, Kevin developed a proprietary multi-channel communication platform that provided compliance reminders along integrated mail order pharmacy services – a first of its kind.

Prior to founding Intelecare, Kevin held senior level sales and marketing positions for Epocrates, the market leader in clinical information and decision support tools for health care professionals, and co-founded HealthInfo Corp., a producer of patient education and continuing medical education videos. Kevin’s 25+ years of experience in health care has covered marketing, technology and sales.

Among other recognitions, Kevin was named one of PharmaVoice Magazine’s Top 100 Most Inspiring People in Life Sciences and has led Jumo Health to be recognized on the Inc. 5000 list as one of the fastest growing private companies for the last two consecutive years.

by Ryan Zanardi

We Are Jumo Health: Svetlanna F. Davis

An Interview with Svetlanna F. Davis, Senior Account Director

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 Svetlanna F. Davis, who has been with Jumo Health since December 2021.

Can you tell us about your journey and what led you to join Jumo Health?

I started my career in advertising/communications, specifically healthcare advertising. If you asked me what I wanted to become when I grew up, advertising, creative, or medical communications is not what I would have said because it wasn’t on my radar.

I grew up in Guyana prior to starting college in the USA. In secondary school (high school), I decided to pursue the business administration path. When I started college, I didn’t know what I wanted to study, but I knew it needed to be something in business but not too stiff. I joined the American Marketing Association (AMA) club on campus, which at the time was the only business club on campus that wasn’t about accounting. It was through this club that I was introduced to advertising. One year, we went to the annual AMA conference, and I attended a session by the NBA where they were playing a sizzle reel highlighting all the cool things they did for underserved communities through NBA Cares. I was blown away by how they combined business, creativity, and social impact. That was when I decided I wanted to be in marketing because I wanted to combine business with creativity and helping people.

A few years later, I applied to be a fellow in the 4A’s Multicultural Advertising Internship Program (MAIP) and was selected by a healthcare advertising agency. I didn’t know healthcare marketing was a thing, but I ended up loving it because it combined that trifecta for me: business, creativity, and helping people, in this case, patients. After a few years in healthcare advertising, I decided I wanted to see what else was out there in the medical communications field, and that’s when the opportunity to join Jumo Health came along. I liked the mission of Jumo Health, which is to provide educational materials that explain difficult medical concepts in ways people can understand and make informed decisions in the clinical studies space. In my career, I was never exposed to clinical trials or had the chance to work in the pediatric space, so I came to Jumo Health for that exposure and to continue helping patients.

What excites you the most about working at Jumo Health?

The people. We have some incredible writers, graphic designers, and creative minds at Jumo Health. I get excited whenever I have a new project with a logo and study branding because I get to see what cool creative concepts our talented designers will create for our clients’ unique needs.

Can you share a memorable experience you’ve had while working with Jumo Health that made you feel proud?

I have many memorable moments, but the one that stands out the most in my mind is the occasion on Rare Disease Day when the company organized a live screening of a short documentary video I had been working on for over a year. One of our clients assigned us the task of creating a captivating and empowering documentary-style live-action video to narrate the journey of how a particular drug obtained approval due to the collaborative efforts and unwavering commitment of scientists, advocates, and corporate stakeholders over a period of two decades. The video emphasized the unity within the community and the significant impact the drug will have on the lives of patients.

Can you describe a time when you felt that Jumo Health made a real difference?

Every now and then, I’ll receive a note from a client expressing how much our products or videos are assisting patients in better comprehending a study, the mechanism of action (MOA) of a drug, or their disease. However, Jumo Health has also had a genuine impact on me personally. There was a moment when a toddler in my family was hospitalized after an incident, and I was able to provide his parents with one of the Jumo Health comic books that contains literature to aid them in understanding and navigating their situation more effectively. Empowering individuals by providing them with resources tailored specifically to their needs.

If you could have one superpower to help you in your job, what would it be and why?

Superspeed, because we work in a fast-paced, rapidly changing field.

by Ryan Zanardi

Understanding the truth about vaccines

by Ryan Zanardi

My Life Changed Forever: A Breast Cancer Journey of Hope and Advocacy

In July 2021, LaToya was diagnosed with breast cancer. Her story, characterized by courage and resilience, begins with the unexpected phone alert that set her journey in motion and culminates in her inspiring advocacy work. Despite the arduous treatments and surgeries, LaToya maintains her hope and dedication to raising awareness of breast cancer, particularly among Black women.

LaToya’s Story

On July 26, 2021, my life changed forever….

This is the day I was diagnosed with breast cancer. It was an ordinary day like no other. I was actually working in the emergency department on a 12-hour shift taking care of patients. You see, I am a board-certified emergency medicine physician assistant in clinical practice since 2012. I received the devastating news of a cancer diagnosis by an email alert. I had been expecting to receive a phone call of my biopsy results from a physician as told by the radiologist a couple days beforehand.

I had felt a lump in my left breast about a month prior. I really didn’t think any significance after discovering the lump. I had not long ago stopped breastfeeding my one-year-old baby girl at the time, and I just figured it was a residual breastfeeding milk cyst. A couple more weeks passed by, and I still felt a lump, so I set up a virtual appointment and was able to have a mammogram and sonogram scheduled.

Leading up to the mammogram appointment, I was somewhat nervous. I was 36 years old and didn’t expect to have a mammogram for another four years at a minimum. Before the mammogram even started, the technician verified my age a couple times and went to the radiologist to discuss if I still needed the mammogram. She returned back to the room and said “The radiologist doesn’t feel you need to have the mammogram yet because of your age and I see here that you recently stopped breastfeeding. We should just do the sonogram.” I replied “NO” and that I wanted to still proceed with the mammogram as ordered.

About two days later, I received the mammogram report findings stating “Benign appearing galactocele consistent with patient’s reported history of recent breastfeeding. Repeat sonogram in three months.” I was reassured after reading this report, and I went on with my normal life activities. In another two days, another radiologist calls me to say, “After reviewing the images on a double look, the margins on this mass looks suspicious and you should have a biopsy.” My heart sank! I immediately knew there was a chance of me now having breast cancer, and I was frantic and impatient. I was upset, mad and crying! I couldn’t wait to be contacted by the breast care specialist as instructed by the overreading radiologist. I dialed into the breast center right away to schedule a biopsy.

As the radiologist started the sonogram before the biopsy, I was also looking at the screen and remember saying to him “those margins do look irregular and suspicious.” I was still hopeful at that point and thinking “Ok, he will try to aspirate this cyst first and if milk is drained then we know it’s not cancerous and can stop the procedure.” Unfortunately, the physician was not able to aspirate any fluid from the breast lesion and he proceeded to do the full biopsy. I immediately began to cry because I felt at this point that it was not a benign finding. The radiologist tried his best to reassure me and stated “Let’s just still wait for pathology because this can be another type of cyst benign in nature. You will get a phone call to discuss the results in about three days.” The biopsy was done on a Friday, and I just remembered having a very long and dreary weekend.

Three days later exactly on July 26, 2021, about four hours into my 12hr shift about 3:40 in the afternoon, I received the dreaded news in a very insensitive manner. I RECEIVED MY BREAST CANCER DIAGNOSIS FROM A PHONE ALERT PATIENT PORTAL EMAIL NOTIFICATION! I had no idea I would be checking results on my phone that would forever change my life. I looked at the report and read the pathology findings showing triple negative breast cancer, grade 3. I dropped everything and went to the physician’s lounge to pull up the report on a desktop because I was thinking, “This has to be a mistake, or I am not reading this clearly.” I printed out the report and read it multiple times and just could not believe it! I grabbed my phone again and tried to dial Kaiser Permanente Breast Center and was not able to reach a physician directly. I could not even think clearly at that point and was erratic! I left work and went home. I am not even sure how I made it home because it was all a blur. Thankfully, I only lived 15 min away from the hospital.

When I pulled into the driveway, I sat in the car for a while. I paged the physician and was speaking to an on-call nurse. She was confirming the results, but I was demanding to speak to a physician to confirm such devastating news. My husband came out to the driveway, and he immediately dropped to the ground in tears. He knew something was wrong because I was home 8 hours early from work and that has never happened. I never spoke to a physician that day. I told the nurse that I was informed by the radiologist that someone would call me with the results. I wasn’t supposed to receive an email notification. She then proceeded to tell me that sometimes patients receive results electronically before the physician sometimes reviews it because of a recent law passage. The CURES Act passed in 2021, requires all hospitals and physicians to make test results available to patients via online portals as soon as they are published. As an ER provider, I knew that my clinical notes were made available to patients online as soon I signed the chart, but I had no idea that this was the impact. I was receiving a cancer diagnosis from a portal notification without the proper confirmation from a physician and with counseling regrading such a sensitive and scary diagnosis. At that moment, I realized I was no longer just a Physician Assistant, I was now a patient too.

I received a phone call the next morning at 8am from a radiologist confirming the diagnosis. He was very cut and dry. He had no emotion tied into the short conversation and just told me I would be contacted by the breast cancer nurse navigator. I was emotionally torn over the next few days and was in a deep somber. About a week later, I had a multi-disciplinary appointment with the medical team about the next steps. I don’t remember recalling much information during that visit. My husband was more of my eyes and ears because I didn’t retain much information at all and was still in a state of shock. As some time progressed as I went through more testing and most importantly, the staging PET scan, I grew weaker mentally, spiritually and emotionally. My PET scan results showed that I was stage 3c. My tumor was 5.5cm and had spread into multiple lymph nodes into my axilla and neck region. The only saving grace was, no metastasis into my organs. I went back to work as I waited for my chemo start date and even resumed work just two days after my port placement. I wanted to keep myself mentally distracted by doing what I love, taking care of patients. I worked until two days prior to chemotherapy initiation treatments.

It took me a long time to process that I was actually a cancer patient. How could this be? I am a licensed health care professional. I am the person who takes care of patients, how did the roles flip? That was the biggest part of it all for me to digest, and I felt vulnerable and weak. After about 8 weeks of chemo, an epiphany came to me. I felt helpless but wanted to do something to still help patients during my cancer treatment journey. The healthcare provider was still alive within me, and I needed to do something to make me feel fulfilled in some way. I decided to start posting videos about my diagnosis in hopes that it would reach another woman who looks like me and the same age. I felt like people needed to know to not wait until your 40th birthday to have a mammogram. Get a mammogram now! Early detection saves lives. No one pushed this health recommendation to me and even through my PA college education, I was always taught mammograms don’t start until age 40. Well, the recommendations and those schoolbooks were wrong. Here I am at the age of 36 without any known family history of breast cancer with a new diagnosis of the most aggressive form of breast cancer.

It wasn’t until after I was diagnosed and started posting videos on social media that I found out that I did have a paternal family history of breast cancer. I always knew my paternal grandmother died of some form of gynecological cancer, but it wasn’t breast cancer. She never really discussed her health history as many African American families do not reveal health conditions. I discovered there’s a strong paternal linkage of various cancers including pancreas, breast and cervical. It was still unclear after speaking with some family members about which family member had what condition because it was assumed to be “quiet about people’s business.” I decided this narrative had to change beginning with me. After growing a stronger social media presence, I started receiving feedback from random women asking me for more advice, sharing their stories, and providing positive feedback. I figured since I couldn’t serve patients directly in the ED at that time while I was on leave from work receiving chemo, then I could reach more via social media.

I have become stronger with advocacy work and breast cancer awareness efforts. I was introduced to Tigerlily Foundation by a friend and quickly found myself in the angel advocate program. I started my own organization as well to help foster my personal breast cancer awareness efforts as well with online speaking panels, community events, TV campaigns, etc. I felt like God was using me for a reason and I became more positive about my journey and diagnosis. I have completed 16 weeks of chemo and 25 sessions of radiation like a champ. I went through a bilateral mastectomy 3 months ago and have another 6-8 months left of oral chemotherapy. My mastectomy went well, and it showed that all 26 of my lymph nodes removed were cancer-free! They were able to remove the tumor surgically with the breast tissue and now I just have to complete oral chemo for any circulating and/or microscopic residual cancer cells in my bloodstream. I am not happy about the upcoming remainder of treatments, but I am hopeful that it will continue to work as my other treatments have.

I am hopeful, grateful, blessed, humble and positive that I will be declared cancer-free forever to be here for my three daughters flourish in life. I still have a lot to live for and travel the world with my loving husband who is my best friend and biggest supporter. I would not be able to get through this at all without him! Cancer is not just a physical diagnosis. It affects your mental, emotional, spiritual and financial state of life as well. It also affects your loved ones and as a cancer thriver, you definitely need a support system and mental health treatment too. I have good and bad days, but I am thriving, and I will not stop until the wheels fall off! I have dedicated myself to helping to eradicate breast cancer and particularly decrease the higher mortality associated with Black Breast Cancer. I owe this to my three daughters whom I pray will never ever have to experience what I am going through in this journey of life.

To all my breasties around the world — don’t forget to fight and count your blessings, because you are blessed my lovelies. Lose yourself in helping others feel better and always remember to be kind to yourselves.

by Ryan Zanardi

We Are Jumo Health: Jesse Jankewicz

An Interview with Jesse Jankewicz, Director of Video Services

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 Jesse Jankewicz, who has been the Director of Video Services at Jumo Health since October 2021.

Can you tell us about your journey and what led you to join Jumo Health?

My journey began at a young age. Growing up, my dad owned a photography studio and eventually added video services to it. I have been going on shoots since I was 9 or 10. I developed a passion for photography, video and editing really early on. I’ve always been drawn (pun intended) towards art and animation. As a kid, I would make little cartoons at home and use my dad’s editing equipment to bring my stories to life.

Fast forward to my life post-college and my intent was to get into the video game industry. Advertising, specifically pharma advertising, found me and I fell in love with it. I worked for many years in advertising and had been with an agency that went under. After my departure from that agency I decided to pursue a video game job so I could check that box. I found one and ended up not enjoying my time there as much as I had thought I would. I really missed the ad life.

A friend and former colleague had joined Jumo health a few months before me. He reached out and told me about the team, the mission and just how great it was. He thought I would be a good fit and be able to help the animation department stand on its own.

Joining Jumo Health has been incredibly fulfilling. We have a great group of people with a shared passion. We work hard, play hard and have a real sense of comradery and family. I’m living my best life right now at Jumo health.

What excites you the most about working at Jumo Health?

I’m biased, but I believe I have the best job here at Jumo Health. I have the best team around me which inspires, challenges and pushes me to be better. I’ve been incredibly fortunate to be able to travel and meet the people we’re trying to serve. I’m on the frontlines with these folks, capturing their stories and I’m able to feel the gravity of what we do. What excites me most about working here is I never know what’s next or who I’ll get to meet next.

Can you share a memorable experience you’ve had while working with Jumo Health that made you feel proud?

There have been many proud moments and memorable experiences here at Jumo Health. One standout for me was being part of a team that came up with a theme for a kids “Understanding Clinical Trials” video. I pitched a sing-a-long, hashed out the ideas with team members, wrote the song, worked with a friend to compose the melody and directed the video. I had to work with some kids to capture the VO and singing part, that was a long, fun day. Ultimately, the final video turned out better than expected and I still find myself watching it from time to time.

What’s something you’ve learned from your colleagues at Jumo Health?

I’m still learning and I still have a lot to learn. The people that work here are hands-down the best I’ve ever been surrounded by. What my colleagues have taught me and continue to teach me is how valuable different perspectives are. There are multiple paths we could take to arrive at our goals. Sometimes the path I think is best is the furthest from it. Listening to other people and their thought process has allowed me to grow and learn.

What does a typical day look like for you at Jumo Health?

There are no two days that are alike here. Generally I like to start my mornings reviewing vendor work and offering direction to get those projects up to our standards. Pepper in a few meetings here and there and then I’ll turn my attention towards the development of our in-house 3D projects. There’s always a VO session in the works so I’ll sit in on those and assist with getting the VO in the best spot it can be. Some days I’m editing videos or fixing existing vendor projects. If I have storyboards to develop or vendor boards to clean up, I like to do those later in the day when things are quiet so I can focus on just those. I like to visit with my amazing animation team (shoutout to Brandon and Chris) and share awful dad jokes or just see how they’re doing and if they feel good about where they’re at. Sometimes I’m called on to assist with odd jobs and help clarify some video processes. Of course, I travel for video shoots a lot so those days are their own thing. Busy, busy, busy.

How do you stay inspired in your work?

It’s cliche, but it’s true. If you do what you love you’ll never work a day in your life. I love art. I love animation. I love video development. I love talking with people and sharing stories. I love being surrounded by smarter people than myself. I love being on a team of people who share my passion and my work ethic. I love working with my friends. I love not knowing how we’ll get it done but knowing we’ll get it done. I love being challenged. I love knowing that somewhere out there a person may have received some real bad news and might come face-to-face with one of our products. If our product empowers them, even better, but we did our part and that keeps me inspired.

by Ryan Zanardi

The Evolution of Communication in Healthcare and Clinical Trials for a Diverse Patient Population

The recent focus on health equity and diversity in clinical research is long overdue and of critical importance to the future of medical advancements.

For communities of colour, however, their willingness to participate in clinical trials has been marred by a history of mistreatment and abuse. To overcome their justifiable mistrust, the industry must be sensitive to the cultural needs of specific communities and provide relevant resources for each cohort it wants to recruit. In all cases, the information provided should reflect the patients’ culture, age, educational attainment and other factors key to engagement and learning. Educational resources that are provided in a familiar format with a storyline and art direction that is reflective of the target consumer group can play vital roles in achieving a successful action-oriented communication plan.

Clinical research has the power to bridge gaps in health equity, increase access to (and utilisation of) healthcare and address traditional social determinants of health. With investments upwards of $2bn required to research and develop a single drug, the importance of a diverse and educated participant pool cannot be overstated. With recruitment and retention numbers problematically low, investing in an informed and engaged patient is critical to ensuring a successful trial in which an investigational therapy is appropriately studied among a broad base of participants.

Enter animation as a culturally sensitive and effective educational resource. A familiar format that brings to life the written word in a way to ensure the patient can successfully act upon the instruction provided.

With its unique ability to overcome literacy and comprehension barriers, animation can serve a critical role in pre- and post-consent patient education – ensuring patients can make informed decisions regardless of their age, educational attainment or ethnic group.

Impact of Investigators’ Struggle to Recruit and Retain Participants

Studies have shown that 85% of trials under-enroll, with 50% of trials enrolling one or zero patients.^{1, 2} Time lost seeking to reach sample size and other recruitment challenges causes delays in 80% of trials.1 Patient recruitment is estimated to account for 40% of a clinical trial’s budget, and delays during the recruitment process can result in lost revenue totaling $600,000 to $8m per day for every day the study is delayed.²

Participant retention is equally essential to the success of a clinical trial. 85% of trials fail to retain enough patients, and the average dropout rate is approximately 30% across all trial types.²

Bridging Health Literacy Gaps

A focus on increasing health literacy by deploying understandable study resources should be leveraged to avoid drug development delays and ensure safe, effective and affordable treatments are made available to the patient communities that need them.

Animation is one example of a cost-effective solution that can be adapted to better serve disparate groups and, as such, improve recruitment, compliance and retention.

Fear of the unknown, especially in a clinical trial, can have a ripple effect downstream; clear and concise information can alleviate some retention issues. Clear communication is key to helping patients absorb and process the information needed to understand and manage their condition and trial expectations. Educational resources are also beneficial to caregivers who are concerned for the welfare of their loved ones and likely in need of information about their condition and the trial.

However, individual patients and caregivers have different degrees of health literacy. Common health literacy gaps can be caused by language barriers (speaking a different native language or being less than fluent), comprehension barriers due to lack of familiarity with medical terminology and anxiety, which can prevent a patient from absorbing and understanding information they would normally comprehend. The way in which trial information is presented can mean the difference between successful enrollment and retention and overall participant satisfaction.

Leveraging Animation to Bridge Health Literacy Gaps and Improve Trial Design, Management and Delivery

Animation has been proven to help patients and caregivers absorb and retain vital information and can calm fears and increase engagement, leading to improved healthcare literacy, patient experience and trial data quality. In a study of animations about clinical trial participation for cancer patients and survivors, a total of 1,194 participants answered questions about the effects of animated educational content compared to brochures both with and without visuals. The materials described placebos, randomisation, the required steps to enrol in a clinical trial and the ways in which patients were protected throughout a clinical trial.

The results showed that animations improved knowledge of and attitudes toward clinical trials in general, and that animations were more effective in presenting information than brochures.

The animations were particularly effective in improving motivation and overcoming health literacy barriers.⁵

The ‘why’ behind the use of animation techniques and its superior effectiveness lies in information processing methods in the human brain. Studies show that 40-80% of what a person hears is immediately forgotten, and the remaining 50% is recalled incorrectly. After three hours, only 25% of what was originally heard is recalled; after three days, merely 15%.

This makes verbal communication a very inadequate method of transferring information that needs to be retained accurately.

Even written or read information is quickly forgotten; after three hours, 72% of what was read is recalled, and after three days, this drops to 10% – even lower than heard information. Therefore, clinical research teams should not merely rely on printed information when seeking to communicate effectively, especially with younger patient populations whose reading comprehension levels vary greatly.

The percentage of recall and retention jumps dramatically when visuals and/or motion graphics are integrated with spoken or written information. The human brain processes images 60,000 times faster than text alone. When comparatively studied, introducing visuals leads to 80% of information being retained after three hours and an incredible 65% retention and recall after three days. The biggest advantage of using animation is the duration of accurate recall even after an extended period of time.6 Animation is an amazing tool for bridging the knowledge and understanding gaps in health literacy because it is visually engaging, accessible and memorable.

Creating content in a format that people prefer increases the value of this tool even more. Videos and animation have quickly become the preferred method of sharing and learning, with the average person now spending around 100 minutes a day watching online videos. 82% of consumer internet
traffic will be videos by the end of this year.⁵

Similarly, two-thirds of people say they prefer watching a short video to learn about a product or service than reading an article/website/post online, viewing an infographic, downloading an eBook, reading something in print, attending a webinar, or speaking to someone.⁷

The Animation Creative Process

Animation can be a powerful tool to bridge language and comprehension gaps, demonstrating ideas and information visually, often without the need for any audio or text. It can bring complex concepts to life, delivering emotion alongside a message, humanizing the healthcare experience for patients, caregivers and healthcare professionals.

When animation is done well, it can enable viewers to immediately relate to the characters and content, enhancing comprehension and retention of information and enabling viewers to act. This medium can be leveraged to boost engagement and improve patient experience before, during and after participation in a trial.

This benefit for patients can also improve the efficacy and speed of the trial, leading to more robust, complete trial data and lessening the chances of costly delays. The value of this approach to clinical trial participation cannot be overstated; if patients can connect to information in a way that carries them from recruitment all the way through participation and follow-up, engagement and completion rates for trials can be drastically improved.

There are six key steps to help ensure the efficient completion and optimal impact of any animated video used in clinical trials:

Step 1: Understand Your Objectives and Your Audience’s Needs

Scientific, business and audience demographic information is gathered, understood and synthesized. Sponsors and stakeholders identify the story’s objectives and clarify scientific and participant information. What do patients need to understand and what should they do with the information?

This is an essential step in preparation for creating a story that will bring the science to life for the target audience.

Step 2: Outline and Develop the Story

Base medical information is fleshed out to identify the main components of the story while still ensuring all necessary details are conveyed. Understanding the audience helps to convey the science in a way that ensures anyone in that audience will grasp the message and meaning. At that point, script and characters can be developed; these can be embodied with recognizable, relatable, consistent thematic elements that will carry throughout a story and reiterate essential information over a significant length of time. A ‘scratch track’ or recorded reading of the script is done to determine the length and cadence of the story.

Step 3: Visualize the Key Elements

Main scenes and action are blocked out visually in a black and white storyboard, outlining the elements and key frames of the story from beginning to end. The storyboard can then be brought to life through animatics adding rudimentary motion and transitions to the storyboards. This step helps to determine the overall visual flow and ensure all the visual elements are scientifically accurate and appropriately represented.

Step 4: Establish a Unique and Impactful Style

The animators put colour and finishing touches on some key scenes to determine and solidify the desired style for all characters, scientific elements, copy labels, etc. This allows all stakeholders the opportunity to refine any visual details before the animation process begins. These style boards are the blueprint that the animators will follow when creating the final deliverable.

Step 5: Voice-Over and Sound Design

During the animation process, music and sound effects will be selected and the appropriate individual will be chosen to voice-over the video content. This can be done in any language or accent desired to enhance the understanding of the content. The right voice, music and sound effects can elevate the overall impact of any animated story.

Step 6: Composite and Complete

The final animation will be delivered in two stages. First, a rough cut to ensure any outstanding needs can be addressed, and then the final cut in whatever format is needed to be approved and utilized.

Animating the Future of Clinical Trials

Bringing healthcare information to life via animation provides engaging, targeted and effective communication. Its value in equipping different patient and caregiver groups – regardless of age, health literacy, language or other demographics – with the knowledge required to make informed decisions makes it an essential and exciting communication tool. Proper use of animation can streamline recruitment measures by explaining clinical trials, simplifying complex study protocols, and as such, reduce participant dropout by reducing fear and anxiety, boosting interest and engagement by delivering recognisable, consistent messaging and guidance throughout the patient pathway.

These improvements will result in faster, more cost-effective completion of trials, and, ultimately, better treatment options for underserved patient populations.

by Ryan Zanardi