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.
Melanoma Awareness Month: Matt's Story
I was diagnosed with stage 3a melanoma cancer in July of last year. Melanoma is caused by overexposure to the sun and UV rays. When your skin darkens, whether tanning or burning, that is evidence of skin damage. What I didn’t know about melanoma, and you may not either, is unlike other skin cancers that typically develop on sun-exposed parts of the body, it can form anywhere on your skin, like the palms of your hands and soles of your feet. Melanoma can also spread unpredictably to any organ in the body. It’s the fifth most common cancer in the United States and cases diagnosed annually are increasing faster than any other cancer.
Two years ago, I started work at Jumo Health as a graphic designer. Prior to Jumo Health, I had worked my way up as a designer across various industries from education and public safety to fashion and professional sports only to get let go due to the Covid-19 pandemic. As scary as that was, it challenged my faith and put things in a new perspective. I was grateful when the opportunity at Jumo Health came, but it wasn’t until 6 months later that I realized what a blessing this job would be to me, especially my health.
I was assigned a project for a melanoma clinical study that included logo development, a website, and other print and digital material. I began to research Melanoma in preparation for the client presentation. The presentation was unique to say the least! The client knew exactly what she wanted and abruptly stopped the presentation after she liked the first logo option, an abstract butterfly. It caught us off guard but was a welcomed interruption. I enjoyed capturing her vision of “fashion not pharma” in the pieces, and the more I worked on them and learned about Melanoma, the more I thought I should get checked out myself.
I learned that melanoma could be hereditary. My mom had melanoma, but because of the simplicity of her experience catching it early and getting it removed at the dermatologist, I didn’t think much of it. I had a mole on my stomach that was of concern, but I would convince myself it was fine. I had put it off for years. Coincidentally, the day after I set up my dermatologist appointment, my mom called out of the blue to tell me to see a dermatologist!
The process from the biopsy at the dermatologist, to the diagnoses, to the surgery, and staging, was full of emotion. Waiting was the hardest part. Knowing I had cancer, but not sure how severe it was or if it was spreading, became a regular source of fear, especially with a 2-year-old and a new baby on the way. I waited five weeks for my consultation with the surgeon. She wanted to remove it as soon as possible, but they couldn’t fit me in for another five weeks. I asked if I could get on a waitlist but was told they don’t do that, nobody cancels, it’s impossible. I could barely sleep that night. I had a strong sense the surgeon wanted me back immediately. To my surprise, the nurse called the next morning and asked if I could do surgery the next day! What an answer to prayer!
Thanks to clinical studies, the standard of care looks different now compared to just 5 years ago. They used Lymphatic Mapping to know exactly what lymph nodes to remove rather than taking them all. In my case, they removed lymph nodes from 3 different parts of my body and found cancer in one.
That was tough news to hear. The majority of the projects I was working on at the time were cancer-related. Repeatedly, I kept reading how early detection is key to survival and how aggressive melanoma is if it reaches the lymph nodes. There I was feeling guilty that I didn’t get checked sooner. Maybe I could’ve avoided it and not put my family through this. Thankfully the cancer was microscopic so maybe I did detect it early enough. Now I have different types of scans several times a year to monitor for recurrence.
As part of my checkups, I also see my primary care, dentist, and eye doctor, as they may find things other scans do not. My initial design project came full circle when the dentist found a spot that needed to be biopsied. While he was poking around in my mouth, I was staring at a mobile of butterflies hanging from the ceiling. It was a joyful reminder of the project I was working on during the initial diagnosis and of God’s faithfulness over the year. In those moments when fear creeps in, I have hope, and in tears, I still find joy. I trust in Jesus who says “I have said these things to you so that in me you have peace. In this world you will have trouble, but take heart, I have overcome the world.” The spot in my mouth was benign.
Like many others, I HATE shots or being poked and prodded. This was a big reason I waited to get my mole checked out. So, for anyone trying to avoid that, go see a dermatologist anyway! Get a full body scan. And remember, any sunburn or tanning bed greatly increases your chances of getting melanoma.
To reduce the chance of getting melanoma, you can:
- Stay out of the sun in the middle of the day (from 10AM to 4PM)
- Wear sunscreen and reapply it often
- Wear a wide-brimmed hat, long-sleeved shirt, or long pants
- Not use tanning beds.
Melanoma often looks like a brown or black mole or birthmark. But melanoma has features that make it different from normal moles and birthmarks. One way to remember the abnormal features of melanoma is to think of the letters A, B, C, D, and E:
- Asymmetry–One half can look different than the other half.
- Border–It can have a jagged or uneven edge.
- Color It can have different colors or a mix of colors (like brown, black, and red).
- Diameter–It is larger than the eraser on the end of a pencil.
- Evolution–Its size, color, or shape can change over time.
Melanomas can also turn into sores that bleed. Many moles and birthmarks are normal and are not melanoma. But if you have a mole or birthmark that you think might be abnormal, show it to your doctor or nurse.
Melanoma can present differently in people of color compared to those with lighter skin. In darker-skinned individuals, melanoma often appears on the soles of the feet, palms of the hands, and under the nails. It can also present as a dark stripe under a fingernail or toenail. Additionally, melanoma in people of color may not have the typical appearance of a dark, irregularly shaped mole and may instead be pink, red, or even the same color as the surrounding skin. These differences can make it more difficult to detect melanoma in people with darker skin tones, leading to later diagnosis and worse outcomes.
The Makings of an Effective Study Website
Creating an effective website for your clinical trial is essential to recruiting participants, ensuring accessible information, and improving the transparency of the trial. Undoubtedly you’ve read all about the importance of a dedicated study website and now you’re wondering how to make that happen.
A simple, yet intuitive user flow with the right mix of copy and multimedia are part of our recipe for creating a well-designed website and experience for your trial participants. In this blog post, we will discuss some key elements that go into it.
1. User-Friendly Design:
The website should be designed to be user-friendly, easy to navigate, and accessible to a wide range of users. The site should have a clear and concise layout, with simple navigation and intuitive controls. The design should be consistent with the branding of the study, should be visually appealing to users, and should adhere to the latest UX/UI best practices.
2. Clear and Concise Information (That Participants Want):
Less is more! Clear and concise information about the clinical trial can go a long way in ensuring retention of the information. In addition, this should be information that people want. Key topics that prospective participants want to know include:
- The purpose of the study
- Information about the drug being studied
- Duration of participation
- Location of sites
- Risks & benefits
Other topics we recommend including:
- Information on clinical research (to foster trust and emphasize the importance)
- Educational content on the condition being studied (to put into context why the research is important)
- Informed consent/assent information (to help bridge the gap between considering participation and signing that lengthy legal form)
- Contact information (so prospective or active participants know who to get in touch with for questions or more information)
Always, our sites include a Frequently Asked Questions section to provide quick and simple answers to the most pressing questions.
3. A Variety of Media:
When looking at how we distribute the information discussed above, we want to use a variety of media types. We recommend specific media types based on the topic of discussion and the audience. For example, quick videos for teens, longer format video for at-home drug administration, infographics for study schedule & assessments.
And always, we recommend including a mixture of media types on the website: videos (contact us to learn more about our custom and off-the-shelf/licensable video options), LOTS of images and graphics to support the copy, and downloadable resources to ensure participants always have access to the information they need while at home (we call this a Resource Center, and it lives as a standalone page on your website).
We also know that it doesn’t need to be all about education all the time. Especially for our pediatric trials, we like to inject some fun into the program. Blood draws and other tests/assessments can be very scary to a young child, and the stress that this puts on a parent or caregiver could be a reason they drop out altogether. For this, we’ve created our Jumo Health Shorts, a series of 1-minute videos featuring Roland & Robin, a bird and bear duo who have fun (and funny) adventures. Young kids are immediately engrossed, making a blood draw or injection an easier task for site staff and a less traumatic event for families. With no dialogue or onscreen text, these videos are available immediately in all markets.
For long study visits, we offer licensable games and digital coloring books to keep children and teens busy (see for yourself how easy it can be to become invested in this red blood cell’s quest to collect all the oxygen!)
4. Privacy and Security:
Websites should be compliant with applicable regulations and standards, such as the General Data Protection Regulation (GDPR) and the Health Insurance Portability and Accountability Act (HIPAA). We use best-in-class security and monitoring platforms to ensure that content is only viewable in the countries where it is approved, and that any sensitive information is pincode-protected.
5. Quick Build Time:
We know that study teams often need quick turnaround times, so our websites are templated and designed for expedited launch. Our partners can choose from 3 templates of varying design, layout, and functionality; we then customize that template to the needs of the study and our clients’ branding (or apply the custom branding we’ve created), and voila!
For study teams who have more time and want functionality for their websites beyond our templated solutions, we offer custom websites. Our Strategic Solutions & DevOps team will partner with you to gather all the necessary information to put together a project plan that meets your unique needs.
In conclusion, creating an effective website for a clinical trial requires a great design, the right mix of information and media, security & regulatory compliance, as well as speed to market. By following these key elements, you can ensure that your website is user-friendly and available in time to support awareness of the trial, improve participant recruitment, and enhance the transparency of the research being conducted.
Get in touch today to start building yours!
References:
- CISCRP, 2021.
We Are Jumo Health: Avis Woods
An Interview with Avis Woods, Director of Visual Design
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 Avis Woods, who has been the Director of Visual Design at Jumo Health since October 2022. Avis lives in Atlanta, GA.
What do you like most about working in healthcare?
I value how educational it is to work in healthcare. Not only am I educating patients, but I am also being educated. The healthcare industry is the perfect place to nurture my desire to help others, while being able to put a creative flare on marketing collateral for all target audiences.
Working in the healthcare industry allows you to nurture your desire to help others while earning a living—talk about a win-win. Indeed, there are few professions where you can touch the lives of others—and make a difference in them—the way you can in the healthcare industry.
Why did you join Jumo Health?
Throughout my career, I have enjoyed my various positions in healthcare. I am incredibly excited to help lessen health disparities and educate minorities. I believe every person should receive affordable, equal healthcare and I hope to make a difference for all underrepresented populations.
Describe a day in the life of your job.
Each day is different and that’s one reason I have enjoyed my creative background. It varies from reviewing creative content, developing successful strategies, providing hands-on design, creative direction and educating others on creative lingo. I enjoy seeing the amazing work produced by other creatives as well as learning new tips and tricks from them.
What motivates you?
I am mostly motivated when I am able to create fun, impactful, educational and colorful artwork with longevity for the target audiences.
What are some hobbies or interests you have outside of work?
I am a foodie! I enjoy trying different restaurants around town and experiencing different vibes. I also enjoy various museum exhibits and festivals. Here in Georgia, there are numerous festivals year-round. I tend to gravitate toward art and food festivals.
What is the most important thing you’ve learned in the last five years?
To go for it! Whether it’s personal or professional, get a gameplan and execute it.
The Importance of an Effective Study Website for Your Clinical Trial
Recently, I got an email from my local health system advertising a clinical trial for a Lyme disease vaccine. As someone who lives in rural New Jersey, this was very exciting news! I feverishly scrolled for the website link, only to find a phone number [*eye roll*]. I would have stopped right then and there, as I was silently scrolling while trying to get my 7-month-old to sleep and a phone call was out of the question; however, I remembered what I do for a living and made a note to myself to call the number the next day. When I did, it was a disconnected line!
Disconnected line aside, asking the potential participant (even one who works in the clinical trial space) to pick up the phone is a gamble. Not having a website to legitimize your trial? A bad bet. I would have happily participated in that study had there been a website to visit, gather more information, and enroll!
For many people considering participating in a clinical trial, the process can be overwhelming and confusing. This is where having a website dedicated to the study can be incredibly helpful. In this blog post, we will discuss why it’s important to have a website for people to reference when considering or participating in a clinical trial.
Accessible Information
One of the most obvious benefits of having a study website for patients to reference is the accessibility of information. Clinical trials can be complex and difficult to understand, especially for participants who may not have a medical background (cue Jumo Health!). A website can serve as a hub to provide detailed information about the trial, the treatment being tested, and the potential risks and benefits – in a variety of formats. This information can be presented in a clear and concise manner, whether on the web page itself, in a video, or as a downloadable resource, making it easier for patients to understand and make informed decisions about their health.
Transparency
Transparency is key when it comes to clinical trials. People want to know what they’re getting into and what to expect. Study websites should provide transparency into the trial process, including how the trial is being conducted, who is conducting it, and what is being asked of participants. This level of transparency can help build trust between participants and researchers, which is essential for the success of any clinical trial.
Improved Recruitment
Recruiting patients for clinical trials can be challenging to say the least, especially if people don’t know about the trial or don’t understand the benefits of participating. A dedicated study website can help improve recruitment by providing potential participants with information about the trial and the potential benefits of participation. Beyond providing much-needed information, the website can serve as a recruitment funnel, being the destination of any digital media campaign efforts, hosting a pre-screener to source qualified participants, and providing a call-to-action for those interested to contact a study site.
Better Patient Experience
Participating in a clinical trial can be a daunting experience. A website can help improve the patient experience by providing participants with a clear understanding of what to expect before, during, and after the trial. This can help patients feel more comfortable and confident in their decision to participate. Throughout the trial, a study website can serve as a one-stop-shop for resources. For younger participants, engagement through games and videos can make an often frightening and stressful experience more comforting.
Better Outcomes
Finally, having a dedicated study website can lead to better outcomes for participants and researchers alike. By providing patients with accessible information, transparency, and a better patient experience, researchers can improve recruitment and retention rates, which can ultimately lead to more successful trials and better treatments for all.
In conclusion, don’t make someone call to find out more information about your trial (if you do, at least pick up). Build a dedicated study website for those considering or already participating in your trial. Better yet, let us build one for you! Reach out today to learn more about our custom and templated study website solutions to meet your study team’s timeline and needs.
Multiple Sclerosis Awareness Month: Allie's Story
I was diagnosed with Relapsing-remitting Multiple Sclerosis (RRMS) when I was 21 years old. RRMS is the most common type of Multiple Sclerosis (MS). MS is a ‘chronic, incurable, and unpredictable disease of the central nervous system (CNS) including the brain, optic nerves, and spinal cord.’ It presents itself very differently amongst patients and is hard to detect for that reason. To me, it’s an invisible disease because if you are not experiencing symptoms, a flare up, or episode, you may be able to look, feel, and operate as normal. This makes it difficult to not only diagnose but explain to loved ones, friends, and beyond. It also makes it difficult to uncover if it is causing feelings like fatigue, confusion, imbalance, high emotions, and more.
There was a period of about six months from the onset of my symptoms to an official MS diagnosis. It was a confusing time for me – I had been in college enjoying life with my best friends. I went home for break with my family and one day my left hand went entirely numb. I figured it would bounce back and just ‘fell asleep’ like our limbs sometimes do, but it perpetuated. It was hard to do my schoolwork using my computer, hard to explain to my parents, and my friends, and ultimately difficult to understand the best next step.
I went home and received an MRI where they detected some demyelination of my nerves on my spinal cord. This means that the protective barrier on my nerve cells in that area were destructed and therefore my nerves were exposed. This often leads to Multiple Sclerosis, but it was too soon to tell. Myelin is important because it works to augment the conduction of nervous signals and protect our nerves from disruptive invaders. I was frantic and scared because by then, my symptoms had progressed and presented themselves periodically. My episodes came and went a few times per day. It was focused on the left side of my body, so in addition to my numb hand, I would get shooting pains down my leg, numbness and tingles on my face and tongue, and slight loss of balance even when completing simple tasks like walking back from class.
About six months from the initial MRI, I was diagnosed with early onset MS. At diagnosis, when my first question was ‘what could have caused this?’, I was told that MS is caused by ‘environmental factors.’ So, the ambiguity of how or why left me disheartened as I was searching for answers. It broke my heart witnessing my parents go through this diagnosis that I would fight for my lifetime. I can’t imagine being a parent in that situation. That is why our caregivers are just as important as our patients, the impact is just as palpable.
From that day, I actively chose to not let my MS define me and instead chose to harness a strong and positive outlook on my future and take as best care of myself as possible. I worked to control the controllable. I addressed vital deficiencies I faced like a major lack of Vitamin D and B12, I ate foods that were proven to reduce inflammation and support your immune system, and I continued to exercise daily to keep peace of mind. But, ultimately, that wasn’t enough, and legions continued to appear on my MRI scans in new areas like my thoracic spine and my brain. I had to decipher a treatment path to ultimately mitigate the risk of becoming physically disabled in the future.
Now, there isn’t a cure for MS, but there are many preventative treatments that are proven to slow the progression of the disease. The first neurologist I saw recommended a treatment path which was a three-time weekly injectable medication. Needles don’t bother me, but that sounded high-maintenance and I had to assume there was a better way, so my family and I kept looking for the best specialist for me.
We all have different needs, fears, and anxieties, depending on our access, age, stage of life. It is important to be diligent in working with providers who understand us as individuals first above all. Once I found my present-day neurologist whom I trust with my life, I felt like I was in the best hands to tackle my future and be as symptom-free as possible. He immediately shut down the idea of the injectable medication because he didn’t think I’d be comfortable living with scars and marks from injection sites, especially as a young woman. I will never forget that he paid such attention to detail, and at the time those injectables were extremely popular. But his approach was to help me live the most disability-free life as possible and that also came with mitigating treatment burden. He knew that the less time I spent thinking about my disease, the more time I spent living my life. He suggested a bi-annual intravenous treatment where I come on site twice a year, infuse, and then go live my normal life.
When I joined Jumo Health I was able to make immediate parallels to my experience, because our goal here is to create the most trusted, relatable, and actionable resources possible so patients are empowered and educated in their clinical trial journey. I was looking for a doctor whom I could trust with my life, understood where I was in my journey, educated me, and helped me take the appropriate steps to be the best version of myself living with MS possible. It really proves the power of attention to detail.
Luckily for me, I haven’t experienced a physical episode or symptom in years, and I am fortunate enough to be able to dismiss that I am living with MS most days. But I know that there are others that are not as fortunate which is why we continue to raise money for research, raise awareness for patients, and strive for as many health equities as possible. We, as patients, all deserve the care we seek and that is why I am so passionate about being a part of the Jumo Health family to create awareness, access, and ultimately action for the empowerment and betterment of patients and their families.
We Are Jumo Health: Dilpreet Barn
An Interview with Dilpreet Barn, 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 Dilpreet Barn, who has been an Account Director in the Customer Success department at Jumo Health since March 2022. Dilpreet lives in the Detroit area of Michigan.
Why did you join Jumo Health?
I’m very excited to have joined Jumo Health to help expand Jumo’s impact and break down medical communication barriers to more patients. I believe in placing the health back in the hand of the patient. I am thrilled to be part of a team that strives to help others, inspire, and educate patients on their health and wellbeing every day! ☺️
What motivates you?
I am deeply motivated by the opportunity to make a difference in the lives of others, and I often feel inspired when I see the positive impact that our educational resources have on patients, caregivers, and their families.
What do you like most about working in healthcare?
I love it because even though I don’t always see the end result, I know I was part of their recovery. Being able to help someone through trying times and making a difference in at least one person’s life is worth it.
What is the most important thing you have learned in last 5 years?
In the last five years, I have found remembering to look on the bright side as one of the most important take-aways. Focusing on the positive can help turn certain situations around. Being able to remain positive and look at things with optimism can really go a long way! This in turn can drive us to try to bring out the best in ourselves and others.
What are some other hobbies you have outside of work?
Traveling, sports, volunteering and concerts! I love traveling, and I try to take a trip every season. Traveling allows me to adapt to new situations and use my organization and planning skills to ensure I have the most fun I can!
World AIDS Day, “Lets Stand in the Light”
Today is World AIDS Day! We can be proud of the tremendous progress we’ve made in the last forty-one years since the first case of HIV/AIDS was reported in the US. Over the past four decades, science and research has come a long way in treatment and care, for those diagnosed with HIV/AIDS and it’s no longer considered a death sentence.
As great as all of this is, we still have an incredible amount of work to do to end the AIDS epidemic completely. Equally important is what I believe is our greatest challenge before us is to eradicate the stigma and shame associated with an HIV/AIDS diagnosis.
The Centers for Disease Control and Prevention (CDC) is pursuing a high-impact HIV prevention approach to maximize the effectiveness of HIV prevention interventions and strategies. Funding states, territorial, and local health departments and community-based organizations (CBOs) to develop and implement tailored programs is CDC’s largest investment in HIV prevention. This includes longstanding successful programs and new efforts funded through the Ending the HIV Epidemic in the U.S. initiative. In addition to funding health departments and CBOs, CDC is also strengthening the HIV prevention workforce and developing HIV communication resources for consumers and health care providers. All of this is good news for those that are at greatest risk of contracting HIV/AIDS.
Now, all we need to do is to develop an initiative and intervention of the heart, an intervention that would eradicate issues of homophobia, stigma, and ignorance. Dr. King said it best when he said, “Through our scientific and technological genius we’ve made of this world a neighborhood. And now through our moral and ethical commitment we must make of it a brotherhood”.
Just recently in Colorado Spring, Colorado, five people were shot dead in a gay nightclub for no other reason than them being in what they thought was a safe space to be themselves and celebrate themselves and stand in their own light and truth. When I think of it, we’ve been so divided along so many different beliefs and ideologies we’ve forgotten the beauty of differences. You know what makes a quilt so beautiful—the different colors, patterns and patches all coming together.
It’s easy to point fingers at others and talk about something we don’t understand. It’s easy to critique and criticize but it takes courage to face our fears and phobias. What I’m talking about is loving one another, loving people, and trying to understand them at all costs. And the best place to start is by standing in our own light and loving ourselves and each other.
This World AIDS Day lets work towards developing a cure for homophobia, stigma, fear, and ignorance. Let’s come together to love and support anyone and everyone that has the courage to stand in the light and be seen as they are. There is this great song that I heard that says, “Stand in the light and be seen as we are, cause the greatest risk we’ll ever take is by far, to stand in the light and be seen as we are”. Just think of all those beautiful souls that have died because they didn’t have the strength, love, and support to stand in the light and be seen as they were. And just maybe, as we show our love and support of others, we too may get the courage to stand in our own light and be seen as we are.
The Many Perspectives of Type 1 Diabetes
What do you think about when you hear “type 1 diabetes?”
Type 1 diabetes (T1D) is a devious disease in that you may not notice symptoms until the autoimmune attack on your pancreas’ insulin-producing cells is already in full-fledged mode. And from that point on, you must take on the onerous task of mimicking the natural function of one of the body’s vital organs. Managing type 1 diabetes is both a 24/7 job and an inexact science. Many type 1 diabetics suffer in silence, constantly struggling to maintain a balance of blood sugar and insulin while dealing with the disruptive and draining symptoms of highs and lows.
My exposure to T1D began in 2015 when my mom was diagnosed with this once “juvenile” disease at age 61. But it really didn’t hit home until my then 13-month-old daughter was fighting for her life with diabetic ketoacidosis, a serious condition in which the body breaks down fat for energy, producing ketones and poisoning the body. My own diagnosis followed 8 months later in 2018. Needless to say, I have experienced T1D through the lens of both a patient and a caregiver. Perspectives can vary greatly depending on experience, age, education, peer influence, social media, etc. It’s interesting to see how even my own perspective of T1D has changed once I became an “insider.” Throughout the last 5 years, I’ve become more aware of myths and misinformation in the public space and on how others may view what you think is obvious.
What type 1 diabetes means to…
| The misinformed | A type 1 diabetic | A caregiver of a type 1 diabetic |
|---|---|---|
| You just need to avoid sweets. | I have to consider everything I eat. There are even carbs in asparagus! | How do I calculate his insulin dose for that birthday cake?! |
| It’s ok to “cheat” every now and then. | If I “cheat” I can end up in the ER. | If I don’t dose her insulin correctly, she could end up in the ER. Her life depends on me. |
| You just need to take a shot or press a button before you eat. | Eating is a mathematical process—it involves counting carbs and figuring out how much insulin I need based on the meal and my current blood sugar. | Every meal involves math—weighing, calculating, and dosing. And if he doesn’t finish his food, then I’m scrambling to make up the carbs I already dosed for. |
| You’ll grow out of it. It can be reversed. | I’ll have type 1 diabetes the rest of my life. My pancreas can no longer work the way it should. | I am her pancreas. She depends on me to replicate the functions of an organ! |
| Just watch what you eat and exercise. | Everything affects my blood sugar: food, stress, hormones, sickness, waking up in the morning, the phases of the moon. | Blood sugars can be so unpredictable. I can do everything right, and still get it wrong. |
At Jumo health, we aim to educate in easy-to-understand ways to reverse misconceptions and support people living with a medical condition or caring for someone with a medical condition by empowering them with knowledge.
What type 1 diabetes means to…
| A first-grade classmate | A first-grader with T1D |
|---|---|
| No fair, you get to eat candy and snacks during class. | I can’t always eat when I’m hungry, especially if my blood sugar is too high. |
| Cool, you have an iPhone! | It is pretty cool that I have snapchat. But I have to carry my phone around wherever I go. |
| You wear a funny thing on your arm. | None of my friends have to wear this on their arm. It reminds me that I’m different. |
| You sure do beep a lot. | I get embarrassed when my continuous glucose monitor won’t stop beeping. |
| You don’t have to take part in gym class if you don’t want to. | I want to play with my friends, but I have to sit out gym class and recess when my blood sugar is low. |
| Why do you visit the nurse at lunch time? | How come none of my friends have to do these things? |
We use simple explanations and relatable stories so that children living with a chronic condition don’t feel alone, and we provide them with the tools and confidence to help them explain their condition to their peers.
Conclusion
Not all perspectives are one size fits all and neither are all educational needs. At Jumo Health we customize materials based on your needs, depending on your audience, age group, and culture.
As a type 1 mom of a type 1 child and senior medical writer at Jumo Health, what we do every day is personal, and I am grateful to be part of such an important mission.
So what does “type 1 diabetes” mean to me? In our household, it means sleepless nights, constant decision-making, endless worry, and no breaks from this relentless disease. But type 1 diabetes also means strength, courage, patience, resilience, compassion, and finding joy in life’s small moments.
Empowering Children With Education Through Clinical Trials
Introduction
In support of World Children’s Day 2022, ICON and Jumo Health have teamed up to share strategies to empower children every day through education, specifically in clinical trials.
Children are not small adults and therefore a medication dose cannot be cut in half and considered to be safe and effective for pediatric use. Although it may seem alarming, more than 70% of medications given to children have never been tested in the specific age population to determine the safety and efficacy profile. This is why we need clinical research– to bring safe and effective treatment options to children worldwide. In order for a medication to be approved for use by the FDA/EMA and other regulatory authorities, it must first undergo high levels of scrutiny, in clinical research. Children are a vulnerable population; however, they deserve the same rights to medication options as adults. We can achieve this by protecting children through clinical research, not from clinical research.
World Children’s Day
World Children’s Day is an annual day of action for children, by children. In order to achieve this year’s theme of “Inclusion, for every child,” it is essential to communicate to children in a way that they can understand. In healthcare this is especially important, as it can impact outcomes. Simple adjustments can make a significant difference on a child’s understanding of their diagnosis or treatment.
Participating in a clinical trial can bring up a variety of emotions, especially in children and adolescents. It is essential that care givers and parents work together to communicate to children in clinical trials and to support them in dealing with those emotions and understanding their experiences. Clear, consistent, and, perhaps most importantly, engaging communication and education are key to this support.
Communicating to Children in Clinical Trials
We recommend breaking down communication by age groups. Broadly speaking, the pediatric population can be segregated into 3 age brackets:
- Preschool and kindergarten
- Primary grades of 7-12 year olds
- Teenagers
Preschool and Kindergarten (2-6)
Children at this age are beginning to understand the emotions they are feeling, although as anyone who has parented a toddler knows, they still have very little control over those emotions. Simple tools can provide guidance to help young children interpret their own feelings and emotions and complex topics can be introduced using simple, character-driven narratives and social-emotional play. Child protagonists should drive the narrative as much as possible in order to make it easy for children to relate. Play-based learning allows children to explore and learn and helps them make sense of the world around them.
Digital exploration and play
It’s astounding to see the proficiency with which a child, sometimes even at 2 years old, can navigate his or her way around an iPad – this technology is now part of their world. In clinical trials we can take advantage of this new reality by engaging children in this space and driving retention with different digital solutions, including games, apps, and books.
Primary Grades (7-11)
Early readers begin to gobble up information on their own, becoming passionate about formats and topics they love. Fellow parents will attest, though, that even at this young age, children quickly become very discerning critics. Simply put: if they don’t like it, they won’t touch it!
Comic books
The strength of comics as an educational tool can be summed up with the 3 E’s: engagement, efficiency, and effectiveness.
- Engagement: Comics impart meaning through the reader’s active engagement with written language and juxtaposed sequential images
- Efficiency: The comic format conveys large amounts of information in a short time—vitally important when you are trying to whittle down a 200-page trial protocol into a short booklet
- Effectiveness: Processing text and images together leads to better recall and transfer of knowledge. Neurological experiments have shown that humans process text and images in different areas of the brain; this is known as the Dual-Coding Theory. These experiments also indicated that pairing an image with text leads to increased memory retention of both. With comics, children not only learn the material faster, they also learn it better.
Peer-to-peer communication
Kids want to hear from other kids in their own words. Direct, clear, honest peer-to-peer communication can offer clarity, empathy, and understanding. Video is an ideal medium for utilizing this method of communication with children in clinical trials.
Middle and High School (12-17)
Young people in middle and high school are all about independence—they want to own and customize information to meet their needs, habits, and interests. Self-expression becomes a priority and can serve as a buffer against the loneliness, everyday stressors, and poor self-esteem that can accompany those living with a chronic illness.
Abstract thinking is achieved around the age of 12 and is well developed by the age of 14. Reasoning also becomes more logical, and independence increases, including the autonomy of self-management over one’s illness, often with the support of digital tools. For this age group especially, it is important to include solutions for clinical trial engagement that harness the power of digital technology.
Teens also often seek a community of like-minded peers, and with the advent of social media, there has been the explosion of online communities where young people spend their time seeking support and advice. For teens living with chronic diseases or disabilities, these social networks can play a vital role in offering an understanding, empathetic community without stigmas and judgment. It is important to examine how those of us working in clinical trials can become meaningfully involved in these communities as well.
Communicating to Caregivers
Parents and caregivers seek tools that help them manage their hectic lives and connect and communicate better with their children.
Easy-to-use tools and mobile technology allow researchers to continue to put educational information and study support into the hands of families, and in doing so, greatly reduce attrition rates. The importance and relevance of this cannot be overstated, whether it’s a trial for a 17-month-old or a 17-year-old.
Trust and a close relationship between site staff, the parents, and the child are of crucial importance and have been shown to be major factors in parents agreeing to a clinical study and in being retained. High-utility, authoritative content builds trust and supports the trial site staff in developing this beneficial close relationship.
Effective and customized communication is vital to mitigating risks at every trial stage. It should be adapted to the developmental, social, and psychological variabilities among pediatric patients. There are various attitudinal factors amongst both adults and children that can lead to attrition, from distrust in research to worries about the disruption of daily life for parents and from feeling like a “guinea pig” to fear of risks for young people. At each trial stage these concerns can be overcome by using simple tools to ensure effective engagement and by adhering to these simple guiding principles: educate and inform, provide ongoing engagement, and show appreciation.
Conclusion
Children deserve medicines that are adapted to them and made for them. This can be realized by protecting children through clinical research. To engage children and theirs parents/care givers in clinical research, it is paramount to obtain their trust in research. This can be achieved by an open, respectful, effective, customized, age-adapted communication. Communication is fundamental and can be done by different means. Let’s use the tools available to engage children and their parents/care givers in clinical research for a better world for our little ones.