Filling the Gaps in Clinical Trial Education, Literacy

This article appears in the September 2022 issue of Applied Clinical Trials Magazine.

 

Jumo Health, a global provider of age appropriate, culturally sensitive medical education resources for patients and caregivers, branched into the clinical trials space three years ago. In this Q&A, Kevin Aniskovich, president and CEO of Jumo Health, discusses its foray into the clinical trials arena, which includes delivering multimedia educational resources to more than 200 trials spanning 90-plus languages in more than 75 countries.

 

ACT: Jumo Health has experienced significant growth. Could you explain where the clinical trials program was a few years ago compared to now? How has it evolved?

Kevin Aniskovich: Prior to 2019, our work was focused on condition-specific resources for pediatric patients, primarily through our comic book line, Medikidz. In 2019, while researching areas for expansion, we uncovered massive deficiencies in clinical research within the areas of informed consent, enrollment, retention, and compliance. After further investigation, we developed a thesis that these issues stem from several incorrect assumptions that people understand their condition; appreciate the complexities of study protocols and how it can impact their participation and the expectations therein; and comprehend the written word, particularly as it relates to sophisticated legal language use in documents surrounding informed consent/assent.

We decided to focus on creating actionable educational materials for use in clinical trials. The initial go-to-market strategy was simple—as experts in pediatrics, we sought to provide age-appropriate resources for children and further segmented those resources by age cohort. We quickly expanded beyond comic books to include digital and video solutions to better reflect the way in which our target populations consume information.

 

ACT: What prompted Jumo Health to identify the need for more health literacy?

KA: With each trial, our learnings continued to inform product development, but also provided a greater understanding of the role that health literacy and culture play in the success or failure of a trial. What started out as providing resources for a pediatric population, began to include adult participants as we saw the impact that health literacy and reading comprehension plays within all ages.

We sought the root cause for the deficiencies in clinical trial recruitment and retention and compliance-related issues. What we found was staggering—only 10% of adults are considered proficient in matters of health care; 50% of adults are able to read above an 8th-grade level. As we examined the types of materials that most sites and sponsors provided to participants and caregivers, we learned that most materials were written at elevated grade levels—often beyond 12th grade—which is simply unacceptable. We can’t expect compliance if we don’t take the time to provide the requisite information in a way the recipient can understand and act upon.

 

ACT: What types of media are you using to teach patients about diseases and clinical trials?

KA: Jumo Health endeavors to meet the patient in a place that is familiar and convenient to how they learn best. To that end, we provide a broad range of resources in multiple mediums, including print, which includes graphic novels to flip charts; digital media, such as online activities to virtual reality; and both live action and animation videos. Our resources can be provided throughout the patient journey.

 

ACT: These resources are customized based on the age and culture of their target audience. Could you explain or give an example of how they can be so different?

KA: For example, the story line and 2D animation that will resonate with a 17-year-old white female with type 2 diabetes from Boston, MA, may not have the same impact with a 48-year-old Black male with type 2 diabetes from Jackson, MS, who may wish to watch a live-action video from someone sharing past experiences. We deliver evidence-based information in a relatable way that takes into account health literacy, reading comprehension, and cultural sensitivities, if the sponsor desires.

 

ACT: What’s next for Jumo Health in clinical trials?

KA: Without giving too much away, we will say that COVID shined a beautiful bright light on clinical research—including the lack of health equity—and the aspects that require a collective effort to cure. Jumo Health will focus squarely on its role to increase participation rates within traditionally underrepresented populations, which we will do alongside a local advocacy network across all our markets. An informed patient is a successful patient.


Jumo Health Celebrates Ranking on the 2022 Inc. 5000 List of Fastest Growing Companies

New Haven, CT – August 16, 2022 – Jumo Health, a global provider of age appropriate, culturally sensitive medical education resources, today announced it is among the fastest growing private companies as reported by Inc. Magazine in its prestigious Inc. 5000 list. Of the tens of thousands of companies who apply, only a fraction make the list.

The companies on the 2022 Inc. 5000 have not only been successful, but have also demonstrated resilience amid supply chain woes, labor shortages, and the ongoing impact of COVID-19. Among the top 500, the average median three-year revenue growth rate soared to 2,144 percent. Together, these companies added more than 68,394 jobs over the past three years.

“Our growth, and this recognition by Inc., is a testament to our employees and their commitment to our purpose and collective work ethic,” shared Kevin Aniskovich, President and CEO of Jumo Health. “It’s such an honor to be on the Inc. 5000 list among such a diverse group of innovative companies spanning all market segments. Especially during this critical time, we are honored to represent the health care industry and all the patients and caregivers that rely on our resources to make informed decisions,” continued Aniskovich.

Jumo Health has experienced exponential growth in recent years, primarily through its global clinical trial solutions. The company was founded to provide disease education for children and their families using comic books. In 2019, Jumo Health identified a need to address health literacy and serve traditionally underrepresented communities as they consider participating in a clinical trial. Through customized multimedia resources created by age cohort and versions specific to various cultures, Jumo Health’s suite of solutions informs patients in a way that leads to accelerated enrollment and longer retention. Jumo Health serves an expansive customer base including the world’s top 10 pharmaceutical companies.

 

About Jumo Health

Jumo Health develops age-appropriate, culturally sensitive, and relatable educational resources for patients and caregivers. We have experience serving diverse populations, covering more than 160 health topics across 75+ countries and 90+ languages – and we’re always expanding! Our multicultural offerings are designed to explain the latest in evidence-based literature using highly visual elements so that everyone can understand complex medical topics. We use familiar mediums to ensure this – from comic books and animation to virtual reality experiences and authentic documentary-style patient stories – all tailored based on age and audience. Jumo Health collaborates globally with more than 180 advocacy groups and community organizations to ensure an authentic patient experience is accurately represented. For further information, visit www.blog.jumohealth.com.

 

More about the Inc. 5000

Companies on the 2022 Inc. 5000 are ranked according to percentage revenue growth from 2018 to 2021. To qualify, companies must have been founded and generating revenue by March 31, 2018. They must be U.S.-based, privately held, for-profit, and independent—not subsidiaries or divisions of other companies—as of December 31, 2021. (Since then, some on the list may have gone public or been acquired.) The minimum revenue required for 2018 is $100,000; the minimum for 2021 is $2 million. As always, Inc. reserves the right to decline applicants for subjective reasons. Growth rates used to determine company rankings were calculated to four decimal places. The top 500 companies on the Inc. 5000 are featured in Inc. magazine’s September issue. The entire Inc. 5000 can be found at http://www.inc.com/inc5000.


We Are Jumo Health: Jeff Pfohl

An Interview with Jeff Pfohl, Senior Director of Strategic Solutions

Great companies are made up of great people. Here at Jumo Health, our most valuable resource is our team. We are a collective of medical folk, product people, designers, and storytellers that share a common goal to change health care today. Through our We Are Jumo Health series, we will introduce you to the dedicated people who are the heartbeat of Jumo Health.

This month, we’d like you to meet Jeff Pfohl, who has been at Jumo Health since February 2019. Jeff lives in Warwick, New York.

What led you to Jumo Health?

Rick Scorzetti and I worked together in the past. I saw that he joined a company called Jumo Health and I sent him a congratulations note. He replied back and let me know he is looking for a few good people. It did not take long after that. I met with Sindy, Kevin, Columba and the team and saw the wonderful passionate work Jumo health was doing, especially with kids.

Jeff Pfohl Family

What do you like most about working in health care?

It is not often your work can truly make a difference in someone’s life. We have so many stories here of our collective ability to impact families in a positive way. The story of Damon, a little boy with bone cancer really hit home. 

 

What is the most important thing you’ve learned in the last five years?

As I move on to middle age:) I can’t but help to appreciate a quote by Abraham Lincoln: In the end, it’s not the years in your life that count. It’s the life in your years. 

Jeff Pfohl Family Portait

Finish this sentence “I am happiest when…”

We live in the country. Our home has large windows in the family room. On Sunday morning my wife Kristi and I get up early, sit in the family room, and simply talk over a hot cup of coffee.

What are some hobbies or interests you have outside of work?

Exercise is great for both my physical and mental health. I enjoy weight training, boxing, and hiking. We tend to enjoy live concerts, all kinds of music (to include cheesy 70s stuff) and many, many family get togethers. I also do quite a bit of volunteer work. Since 2007, I  along with some good friends have run a charity to provide Christmas presents for needy kids in Appalachia.


Understanding Osteosarcoma: Damon's Story

This blog post was written by Brian Billeck, Damon’s father

Damon was diagnosed with Osteosarcoma in January 2014, at the age of 9, after his mother Lisa hugged him and felt an unusual lump on his left arm. Osteosarcoma is rare, but is the most common form of bone cancer in children and teens. While it can develop on any bone, it is usually found at the quickly growing ends of the “long bones” such as those in the arms and legs. In Damon’s case, the enormous tumor had destroyed most of his left humerus (the upper arm bone between the elbow and the shoulder).

Damon and His Father

Osteosarcoma grows quietly.  Usually, by the time you find it, it may be too late.  Despite the damage from the tumor, Damon underwent limb-salvage surgery in April 2015 (a complex operation which removes as much cancerous tissue as possible without amputating the entire limb), followed by ten months of highly intensive chemotherapy. After treatment Damon was N.E.D. (No Evidence of Disease).  However, just a few months later, scans showed the cancer returned to his arm. This time the only option was amputation.

When Jumo Health reached out to Damon and asked if he would like to be featured in a comic about Osteosarcoma he jumped at the chance.  When the first draft arrived, Damon was so nervous.  When he saw the cover art depicting him as a One-Armed Superhero “American Boy” he started crying!  He was so happy they kept him who he was.  It was important to him that other kids see that even if cancer took your arm, or leg or whatever…it could never take your spirit, your strength, or your family.

Understanding Osteosarcoma is a journey that takes Dara & Damon through the body and educates them in a manner easy to understand.  It’s a phenomenal way to teach children.  The journey ends with a family hug as they fight together!

Damon passed away from Osteosarcoma April 3, 2018, at the age of 13.  He was surrounded by his family and holding the hand of his twin sister. Damon had a saying:

“Strength isn’t about how much one can lift.
Strength is about how much one can lift others.”

Damon’s parents and family continue to raise awareness for Childhood Cancer and spread Damon’s positive message.


Jumo Health Responds to FDA Draft Diversity Plan Guidance

In April, the FDA published draft guidance for sponsors on how to create a “Race and Ethnicity Diversity Plan” that will help to ensure they enroll proportionate numbers of participants from underrepresented racial and ethnic populations in their clinical trials.1 The agency asked for industry feedback on the document by June 13.

The FDA reported that Black or African American, Hispanic/Latino, Indigenous and Native American, Asian, Native Hawaiian and other Pacific Islanders, and other persons of color are often underrepresented in medical research, even in studies of diseases that may be more prevalent among their population. For example, COVID-19 infects Black and Hispanic people at 3.5 times the rate of the general public.

The reasons for this reduced participation are multi-faceted and include lack of access to healthcare, difficulty reaching clinical research sites, and an inherent mistrust of the healthcare system based on historical abuses, such as the USPHS Syphilis Study at Tuskegee, the Diabetes Project with the Havasupai Tribe, and the treatment of Henrietta Lacks.

But it is vitally important that clinical trial populations are truly representative of the general population to make sure that any new products approved by the FDA are safe and effective for everyone who might want to use them. For example, the FDA referenced variations in skin pigmentation, which exist across diverse populations, and can impact the performance of pulse oximeters (which measure oxygen saturation levels in the blood) and some devices that detect skin cancer.

 

Shared Perspective

Jumo Health submitted a formal response to the FDA2, applauding the Agency’s comprehensive efforts to improve the enrollment of racial and ethnic populations in clinical trials through study design, education, and continuous process improvement with real world data.

We also fully support the Agency’s efforts to define – indeed redefine – diversity beyond race and ethnicity to include other underrepresented populations defined by:

  • sex
  • gender identity
  • age
  • socioeconomic status
  • disability
  • pregnancy status
  • lactation status
  • co-morbidity

It is critical to ensure that the clinical data collected and analyzed can provide complete and accurate conclusions that represent the entire U.S. population.

 

Participant Education

In our response, we commended the Agency for underscoring the importance of disease education “for all patients who are expected to use the medical product if approved.” But we also suggested that the FDA consider expanding this goal beyond disease education to ensure that resources are also available for potential clinical trial participants which explain:

  • the informed consent/assent forms
  • study protocol
  • study objectives
  • study requirements

These resources should be in a form that is understandable to someone of their age and culture. Providing accessible educational resources is a vital step in enrolling, and most importantly, retaining, participants in a study.

We must overcome the fact that 9 out of 10 adults are health illiterate3,4 and more than 50% cannot read above the 8th grade level.5 The industry is struggling to enroll and retain enough patients; 85% of all clinical trials fail to retain enough patients6 with 93% of all identified patients dropping out after informed consent.

At Jumo Health, we are addressing these challenges head on by developing highly visual, culturally sensitive educational resources in formats that are tailored to match the age and experience of our audience. This approach is imperative to ensure that our audience not only comprehends the information but knows what actions they need to take. We employ a wide range of media, including comic books, animation, virtual reality experiences and documentary-style videos to explain diseases, describe the clinical trial process, and tell patient stories. All our materials are developed by medical doctors, based on evidence-based, published research, and created in partnership with advocacy groups and community organizations.

We have developed education materials for patients and caregivers in more than 100 therapeutic areas, for all the different age groups, and in 92 languages and 76 countries. In fact, we have received institutional review board and ethics committee approval for hundreds of digital and print pieces, describing more than 200 conditions.

We have achieved this level of success by taking a highly inclusive approach, overseen by our internal and external Diversity, Equity, and Inclusion Committees. We collaborate with more than 180 advocacy groups and community organizations globally to ensure that we always represent authentic patient experiences. We also employ Community Engagement Teams, which are local action boards convened to review project materials and provide input on the design, voice and tone used. Those teams later introduce the finished materials to their local communities.

 

Conclusion

We wholeheartedly support the FDA’s efforts to ensure that sponsors have a Race and Ethnicity Diversity Plan in place from the early stages of their drug, biologic, and medical device development programs. This well considered approach will help to ensure that clinical trial participants are truly reflective of the general population and that medical products which are submitted to the FDA for review will be more safe and effective for all future users.

 

References

  1. FDA Draft Guidance: Diversity Plans to Improve Enrollment of Participants From Underrepresented Racial and Ethnic Populations in Clinical Trials
  2. Jumo Health’s response to the draft guidance
  3. Cutilli CC, Bennett IM. Understanding the health literacy of America: results of the National Assessment of Adult LiteracyOrthop Nurs. 2009 Jan-Feb;28(1):27-32
  4. Baedorf Kassis, S., S. A. White, L. Myers, C. Trudeau, and B. Bierer. 2019. Advancing health literacy in clinical research: Clear Communications for Every Participant. NAM Perspectives. Commentary, National Academy of Medicine, Washington, DC.
  5. U.S. DHHS: America’s Health Literacy: Why We Need Accessible Health Information

Clinical LeaderConsiderations For Improving Patient Recruitment Into Clinical Trials


We Are Jumo Health: Juliet Taylor

An Interview with Juliet Taylor, Manager of Sales Enablement and Contracting

Great companies are made up of great people. Here at Jumo Health, our most valuable resource is our team. We are a collective of medical folk, product people, designers, and storytellers that share a common goal to change health care today. Through our We Are Jumo Health series, we will introduce you to the dedicated people who are the heartbeat of Jumo Health.

This month, we’d like you to meet Juliet Taylor, who has been a Manager, Sales Enablement and Contracting at Jumo Health since July 2021. Juliet lives in Raleigh, North Carolina.

Juliet Taylor

What led you to Jumo Health?

I have always been passionate about scientific literacy & communication. As an undergraduate and graduate student, I worked on multiple research projects and internships focused on education and public understanding of scientific concepts. Jumo Health was a great fit for me and I love working for a company that prioritizes health literacy and patient understanding.

What is the thing you like most about working in health care?

The true commitment of my coworkers to creating accessible and fun educational resources. Everyone’s primary goal is always “What’s best for the patient?” I love working on a team that is so dedicated to our mission.

Juliet Taylor w/ Dog

What motivates you?

I am most motivated when others are relying on me. I love putting in the effort to make someone’s day better or easier.

What is the most important thing you’ve learned in the last five years?

The most important lesson I have learned is that no one is an island. Everyone needs help, support, and a sense of community to live their best life. In the last few years I have really learned to value relationships with friends, family, and coworkers.

What are some hobbies or interests that you have outside of work?

I am a great cook and love creating new recipes. I am also on a weightlifting team. Most importantly, I love to go on adventures with my 2-year-old dog, Izzy!


Jumo Health Named Top 10 Patient Engagement Solution Provider

New York City (29 October 2019) — Jumo Health, the global provider of award-winning, age appropriate health care resources, is proud to announce that it has been recognized as one of the top 10 patient engagement solution providers of 2019 by Healthcare Tech Outlook magazine.

A panel comprised of CEOs, CIOs, and industry analysts, including Healthcare Tech Outlook’s editorial board sought out companies offering powerful solutions that are having a positive impact on clinical outcomes and the broader health care system. Jumo Health came top of the list and was selected as the cover story. “Jumo Health is at the forefront of tackling some of the most intricate challenges,” noted Alex D’Souza, Managing Editor of Healthcare Tech Outlook. “Patient engagement must now extend beyond the exam room, using… more regular and proactive interactions between physicians and patients. Interactions that encourage patients to actively manage their health…to drive measurable improvements in population health,” continued D’Souza.

“It is an honor to receive this recognition alongside the other organizations seeking to ensure patient centricity is more than a buzzword. Jumo Health is a collective of like-minded, collaborative people that share a common goal to change health care today. For too long the industry has ignored the role global deficiencies in health literacy and reading comprehension play in impacting patient care. By creating authentic resources with relatable patient stories to explain a condition, treatment pathway, or how to manage living with a disease, we ensure the patient is at the center of the experience and has the best chance to meet their desired outcome,” said Kevin Aniskovich, President and CEO of Jumo Health.

Read the cover story here.


Jumo Health Helps Young People to Become Effective Patient Advocates

New Haven, Connecticut (June 21, 2022) — Jumo Health, a global provider of age appropriate, culturally sensitive, medical education resources, today announced that it is extending its ongoing support of the International Children’s Advisory Network (iCAN), a global consortium of youth advisory groups. iCAN empowers pediatric patients worldwide and provides a voice for children and their families in healthcare, clinical trials, and medical research.

Jumo Health will lead two educational sessions and serve as the name sponsor at the 2022 iCAN Summit, which will be held at the Université de Lyon in Lyon, France from July 11-15.

“The annual iCAN Summit provides a rare opportunity for young patients to learn more about medical advances, make new friends with similar life experiences, and develop the requisite skills to become strong advocates for themselves and patients like them. We consider the Summit to be a valuable experience and are proud to continue to support iCAN and the Summit,” said Kevin Aniskovich, President and CEO of Jumo Health and a member of the iCAN Advisory Board.

“Jumo Health was founded to address the unique needs of pediatric patients and while we now serve all ages, we continue to work closely with them and patient advocacy groups around the world to develop relatable resources that reflect real patient experiences. We quickly learned that pediatric patients require more engaging forms of storytelling, particularly from real patients who share their personal experiences, as they seek to understand their health condition, what to expect throughout their journey, and how to explain their condition to their friends and family,” continued Aniskovich.

“We are proud to partner with Jumo Health as they share our desire to give pediatric patients and their caregivers a greater understanding of, and stronger voice in, clinical research and health care programs. The iCAN Summit provides an ideal venue to share ideas, the future of treatment, experiences, and to learn the skills required to achieve those goals,” said Leanne West, iCAN President and Chief Engineer, Pediatric Technologies at Georgia Tech. “We are excited to continue our partnership with Jumo Health which has already resulted in the development of a series of comic books entitled, Understanding Clinical Trials, which help to ensure potential clinical trial participants can understand and act upon physicians’ instructions.”

The annual iCAN Summit provides an opportunity for its youth members to learn about pediatric medicine and meet those dedicated to improving health care, including entrepreneurs, researchers, scientists, and physicians from around the world. In addition to learning more about medical and scientific advances, participants will have the opportunity to interact and share their own stories and messages of hope.

Jumo Health’s educational sessions will focus on:

  • Sharing Stories: The Jumo Health Approach to Healthcare Education, Presented by Columba Quigley, MD, and Sindy Nathan. In this interactive session, leaders from Jumo Health will explain why and how real patient stories can improve outcomes in healthcare. They will dive into the process of creating effective health communications and ask for unfiltered feedback on the company’s most recent materials.
  • Health Animated: How Animation Improves Medical Understanding Across All Ages, Genders, Languages, and Ethnicities, Presented by Joseph Brady and Jesse Jankewicz. Jumo Health will lead an interactive session to show the in-depth process of developing an animated story and how those animations can impact global health understanding. Participants that get involved might see their own story come to life.

Additional information about the 2022 iCAN Summit is available at www.icanresearch.org/2022-summit.

About the International Children’s Advisory Network (iCAN)

iCAN is a worldwide consortium of children’s advisory groups, known as Kids Impacting Disease Through Science (KIDS) and Young Persons Advisory Groups (YPAGS). These dedicated youth member groups work in unison around the world to provide a voice for children and families in medicine, research, and innovation. For further information, visit www.icanresearch.org.

About Jumo Health

Jumo Health develops age-appropriate, culturally sensitive, and relatable educational resources for patients and caregivers. We have experience serving diverse populations, covering more than 160 health topics across 75+ countries and 90+ languages – and we’re always expanding! Our multicultural offerings are designed to explain the latest in evidence-based literature using highly visual elements so that everyone can understand complex medical topics. We use familiar mediums to ensure this – from comic books and Pixar®-style animation, to virtual reality experiences and authentic documentary-style patient stories – all tailored based on age and audience.

Jumo Health collaborates globally with more than 180 advocacy groups and community organizations to ensure an authentic patient experience is accurately represented. For further information, visit  www.blog.jumohealth.com.


5 Tips to Improve Patient Education

WHAT IS PATIENT EDUCATION?

Patient education is a critical part of patient care. It includes: instructing patients on follow-up care, prevention, and how to take a proactive role in their own healthcare. Effective patient education can lead to better outcomes and should be a goal of every medical provider.

Unfortunately, patient education is not always easy. Health information is complex, and patients can easily become confused. Without the proper educational resources, doctors, clinical trial professionals, pharmaceutical reps, and other health educators may find teaching patients about medical issues difficult.

To help encourage patient education, we have put together our top five strategies for educating patients effectively.

 

5 Tips for Better Patient Education

1. Demonstrate Interest and Establish Trust

When teaching patients about medical issues, it is important first to establish trust. Show them that you are interested in more than just their physical well-being. Creating a rapport with your patients will make it easier for them to hear your medical advice later, making it less likely that they will tune out your words.

Some ways that you can demonstrate your interest in patients include:

  • Ask how things are going with their work, hobby, home life, etc.
  • See if they have been anywhere interesting or if they have upcoming travel plans.
  • Find out if they have read any good books or watched any good TV shows or movies recently.

Patients who feel cared for and heard are more receptive to education. In addition, investing a minute or two of non-medical conversation can help put patients at ease, encouraging them to open up more about any problems, medical issues, or worries they might be facing. It can even give you clues about your patient’s preferred style of learning, which leads us to the next strategy.

2. Adapt to the Patient’s Learning Style

Even patients who want to learn may have difficulty doing so if the information is not presented in a way conducive to their style of learning. Barriers can include language, culture, level of formal education, and even misinformation that a patient received from a family member, friend, or the internet.

Some patients will already know what kind of learner they are (visual, auditory, etc.) and might be able to tell you how they learn best. Remember: Teaching patients requires patient teaching. Taking the time to learn how your patients learn will improve patient outcomes in the long run.

 

3. Use Innovative and Age-Appropriate Education Materials

Patient education materials come in all forms. Newer, more innovative formats are finding their ways into the health education space, giving patients more opportunities to learn in fun and unique ways. Some of these new formats include comic books and podcasts.

Traditional pamphlets or videos are often used in the waiting room. These do have some value, but fresh, individualized approaches to patient education are more likely to be effective in the long run.

Pro tip: Check out Jumo Health’s collection of innovative health education resources.

 

4. Ask Patients to Explain Information Back to You

Far too often, patients will say that they understand what their doctor told them—even if they really don’t! The reasons why a patient may say they understand something when they don’t are numerous:

  • They might be in shock or overwhelmed by a diagnosis and just want to leave.
  • They might be too embarrassed to admit that they don’t really understand it.
  • They might genuinely think they understand it, but realize later they forgot some important piece.

One way to prevent patients leaving before they fully grasp what you are telling them is to have them repeat the information back to you. When doing so, you can correct details they get wrong or fill in gaps, helping to reinforce the information.

If you suspect a patient is simply repeating what you said without actually understanding it, you can also ask him or her to re-word it in a way that would help a family member or friend understand the information.

 

5. Educate the Patient’s Family or Caretaker

Two minds—and two memories—are better than one. Inviting a family member, friend, or caretaker to join the education session will help to ensure retention of the medical information. This is especially important for young children or individuals who have a learning disability or special education needs.

Inviting a caregiver to join the conversation can create a feeling of support and community. This may be especially important at a decision-making time, since then there will be at least one other person who understands the issues at hand.

 

Why Is Patient Education Important?

Patient education is not just a nice thing to do—it actually improves patient outcomes. According to a study published in the Annals of Internal Medicine, hospitalized patients who receive individualized instruction booklets and instruction from a nurse are 30% less likely to return to the hospital within 30 days of discharge.

Patient education doesn’t just provide patients with useful information. It can have an appreciable, positive impact on their health. Contact us to start the conversation about improved patient education.


What is Health Literacy?

Introduction

Health literacy is much more than being able to read. Health literacy is defined by the CDC as “the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.” In other words, it’s the ability of people to read health-related information, understand it, and act on it.

Low health literacy is very common among adults in the US. According to the first ever national assessment of adult literacy, only 12% of adults have adequate health literacy skills. This means only 12% of adults in the US can navigate our complex health system, engage in medical discussions, and fully participate in managing their health.

Key statistics:

  • More than 80% of health information provided in a doctor’s office is forgotten before patients or parents get home.
  • More than 50% of the recalled information is remembered incorrectly.

This is a problem that affects the entire population, but certain groups are more heavily impacted:

  • People living below the poverty level.
  • Black, Hispanic, American Indian/Alaska Native, Hispanic, and multiracial people.
  • People without a high school education.
  • Non-native English speakers.
  • Adults over the age of 65.

Poor health literacy results in negative health outcomes.  Low health literacy is associated with high rates of hospitalization, poorer self-reported health, and higher healthcare costs.

How to Promote Health Literacy in Written Materials

  1. Maximize white space. Difficulties with reading are often more to do with the look and layout of the text versus the content itself. Short, clearly separated chunks of text that maximize the amount of white space on a page are best.
  2. Consider line spacing. Spacing between lines also impacts readability of text. If lines are too close, readers may drop lines. If too far apart, how the lines relate to each other may be unclear. Line spacing (otherwise known as leading) of 2 pt is recommended for a normal 12-point type size.
  3. Use upper- and lowercase letters. A combination of upper and lowercase is easier to read than upper case only. To show the importance of text, it’s better to use bold type rather than overuse upper case.
  4. Break up long text with illustrations. Illustrations break up the density of text and should, if possible, come at the end of paragraphs or sentences, rather than in the middle of them.
  5. Add headings and section titles at the top of each page. The look of the layout of pages is also important. It’s recommended that headings and new sections are located at the top of pages. Sentences and paragraphs should not run into the next column or page.
  6. Use thicker paper and avoid dark backgrounds. Paper should be thick enough to avoid shadowing from the text over the page. Darker colors are difficult backgrounds for reading.
  7. Write in short sentences. It is best to write sentences with one main point per sentence. Use full stops rather than semi-colons.
  8. Try to write at a sixth grade reading level. According to the American Medical Association (AMA) and the National Institutes of Health (NIH) recommendations, readability of patient education materials should not exceed a sixth grade reading level. The average reading skill of U.S. adults is at the eighth-grade level.

 

Simplify Medical Language

At Jumo Health, without compromising the medical accuracy of the information delivered, we avoid unnecessary medical jargon, using easy-to-understand words with fewer syllables.

For example, instead of:

  • Hypertension: high blood pressure
  • Investigations: tests
  • Cardiovascular: heart
  • Pulmonary: lung
  • Administer: give
  • Approximate: about

Avoiding polysyllabic words, in addition to keeping sentences as short as possible, significantly lowers the readability scores of written materials.

 

Combine Text and Illustrations

Our products use a combined visual and verbal format to enhance comprehension of the educational content. This helps to ensure that those with lower readability scores can still learn from the illustrated content.

For example:

  • Explaining tests that may take place during a clinical trial (adults):

  • Explaining tests that may take place during a clinical trial (children):

  • Explaining complex conditions and how they impact the body:

Conclusion

Efforts to improve health literacy have a number of benefits. They lead to improved health knowledge and self management of long-term medical conditions, positive lifestyle changes, and a reduction of burden on healthcare services. In addition, health literacy is a significant mediator of social determinants of health, and health literacy interventions have the capacity to reduce health inequalities.

 

References:

  1. Centers for Disease Control and Prevention. What is Health Literacy [webpage]? Available at https://www.cdc.gov/healthliteracy/learn/index.html. Accessed on May 9, 2022.
  2. Kutner M, Greenberg E, Jin Y, Paulsen C. The Health Literacy of America’s Adults: Results from the 2003 National Assessment of Adult Literacy (NCES 2006-483). Washington, DC: U.S. Department of Education, National Center for Education Statistics; 2006.
  3. Aaby A, Friis K, Christensen B, Rowlands G, Maindal HT. Health literacy is associated with health behaviour and self-reported health: a large population-based study in individuals with cardiovascular disease. Eur J Prev Cardiol 2017;24(17):1880–1888.
  4. Bass, PF. Three steps to boost health literacy. Contemporary Pediatrics. Jan 2018. http://www.contemporarypediatrics.com/modern-medicine-feature-articles/3-steps-boost-health-literacy