Ryan Zanardi

Raising Awareness for World Sickle Cell Day

Raising Awareness for World Sickle Cell Day

Today,  we celebrate World Sickle Cell Day, a chronic condition which affects approximately 100,000 Americans and occurs in 1 out of every 365 Black or African-American births.¹ We had the unique privilege  of speaking with Jew-E’L Darbone’, the  founder and CEO of Bold Plus+, a community based nonprofit organization dedicated to sickle cell awareness, advocacy, and empowerment.  Living with sickle cell type SS, Jew-E’L shares her story about managing the condition, the challenges she has faced, and the impact her voice has had on countless others.

“I was four when I first realized I was different. I went to play with my friends in the sprinkler system and the cold water sent my body into one of the worst [sickle cell] crises that I’ve ever had, ” Jew-E’L recalls.  “That was really impactful for me at that young age to realize I can’t do what all my friends are doing.”

Sickle Cell Disease Explained

Sickle cell disease (“SCD”) is a group of inherited red blood cell disorders that affect hemoglobin, a protein that delivers oxygen to cells throughout the body; In sickle cell disease, hemoglobin isn’t made correctly.  The hemoglobin forms long chains inside the red blood cells making them curved (or, “sickled,” hence the name) and stiff. These cells, then, can not flow smoothly through the bloodstream, and get stuck, which slows down or blocks blood flow to different parts of the body. This can cause problems in the body such as a blockage of blood flow to the spleen, brain, and lungs, and severe pain.  A hallmark of this condition  is recurrent, acute, and chronic pain that often requires immediate management and emergency hospitalization.² When these things happen all of a sudden, it’s called, as Jew-E’L mentions above, a sickle cell crisis.

The Challenges of Living with a Chronic Illness

Diagnosed at birth, Jew-E’L describes the challenges she faced as a young child recalling, “it was very, very isolating. I thought I was the only one in the world that had sickle cell disease and I didn’t have any family [members] who could understand or empathize with me. I really didn’t have any friends or anything like that.” Along with the physical burden of managing a chronic illness, it can also have an effect on a person’s mental health. Evidence suggests that depressive and anxiety disorders are much more prevalent among medically ill children and adolescents when compared with the general population.²  In one study of SCD, 40% of the participants met the criteria for depression.²

Jew-E’L notes, “I dealt with a lot of mental health issues. I dealt with a lot of suicidal thoughts and different things like that.”  For Jew-E’L, the opportunity to attend sickle cell camp and establish a strong network of peers was a turning point. She explains, “sickle cell camp really saved my life because I found my tribe. I thought, wow, all these kids are dealing with the same issue that I’m dealing with and they’re just as unique as I am. They’re all different, we all deal with different issues, there’s no two cases of sickle cell that are alike. They call us snowflakes because each one of us is totally different. But, we all go through the same struggle.”

Finding Support and Resources

Access to educational resources are not always readily available, especially in traditionally underserved communities. For Jew-E’L, the first educational tool she received about SCD was at camp when she was 11 years old. “I wish that I had more doctors that spoke to me and not so much directed everything towards my mom. I wish they would have prepared me to become my own best advocate. I really feel like I was late to the game, like, I was a late bloomer  when it came to taking care of my own health care decisions and using my voice to speak up for myself,” shares Jew-E’L.

When reflecting on what she wants to see for patients with sickle cell disease, Jew-E’L states, “I wish more doctors would approach the whole patient and not just treat a diagnosis. But actually the entire person —  from the mental to physical, to dealing with every aspect of the person and not just the diagnosis of sickle cell disease.”

Becoming an Advocate

Finding strength and support from the sickle cell community is part of what drove Jew-E’L to start Bold Plus+.  When asked about her biggest support, Jew-E’L explained, “It’s the strength of our community, being able to really trust one another, to find strength in each other,  and be inspired by one another.” Jew-E’L’s social media community reaches over 5,000 people, giving people with sickle cell disease the opportunity to connect and share knowledge and resources. While Jew-E’L didn’t have this type of online support network growing up, she is working  hard to ensure all patients with sickle cell have this resource moving forward.

So today, we celebrate Jew-E’L and her network of sickle cell warriors who fearlessly share their stories in an effort to help improve the journey and lives of other patients with sickle cell disease. 

At Jumo Health, rare diseases, such as sickle cell disease, is an area where we have dedicated considerable energy and effort. To date, we have provided sickle cell disease resources across 27 different countries and in 25 languages. Our mission is to ensure that regardless of age, educational attainment, or socio-economic status, patients and their entire care circle can have access to information they can understand and act upon — whether it be at diagnosis, during treatment regimen, or while participating in a clinical trial. To learn more about our solutions, visit blog.jumohealth.com/solutions. To access our sickle cell resources, click here.

We are so appreciative of Jew-E’Ls time talking with us and her passion to serve the community that we are providing a 20% discount off all of our SCD resources all weekend long!

About Bold Plus+

Bold Plus+ is a  community based non profit organization dedicated to sickle cell awareness, advocacy, and empowerment. You can follow them on Facebook and Instagram.

Sources: 

1. Centers of Disease Control and Prevention. Data & Statistics on Sickle Cell Disease. Accessed June 18, 2020. https://www.cdc.gov/ncbddd/sicklecell/data.html
2. Benton, T et al.  Anxiety and depression in children and  adolescents with sickle cell disease. Curr Psychiatry Rep. 2007. 9(2):114-21.

by Ryan Zanardi

The Impact of a Cancer Diagnosis on the Patient and the Entire Care Circle

CELEBRATING NATIONAL CANCER SURVIVORS DAY

Today we celebrate National Cancer Survivors Day. As we honor the lives of those who have battled cancer,  we recognize the impact a cancer diagnosis has on the entire care circle — in some cases, inspiring those people to make impactful change in the lives of future patients. This piece shares the stories of just two in a sea of individuals who have confronted and beaten cancer.

Jen, an emergency room nurse for 15 years, still remembers vividly the day she was diagnosed with nasopharyngeal carcinoma. “As soon as [the doctor] put the scope in my nose… his entire face changed. And, it was at that moment, I knew I had cancer.” From that moment on, it was a non-stop road to recovery — assembling her care team, Jen worked tirelessly to research her condition, go to her treatment, and deal with its grueling side effects. Jen continued, “I didn’t tell anyone [when I was first diagnosed]. I went straight into nurse mode… I wanted to know all the data. How do we treat it? How do we beat it? I wanted to know the survival rates. I wanted to know everything. I couldn’t get in my feelings about it — I went straight into ‘what do I need to do next’… straight into fight mode.”

Shoby tells a similar story when her brother, Yadev, was diagnosed with Acute Lymphoblastic Leukemia (ALL) when he was one year old. “I still remember the moment the results were being [shared with] my mother.  I was just outside of the room playing with the toys provided by the hospital… something didn’t seem right as the doctors had a somber look on their faces. It wasn’t until they had left the room that I went in to find my mum crying in hysterics and explaining it over the phone to my family.” Being nine years old at the time, she had only heard the word cancer in association with the word death, so she “instantly thought of the worst case scenario — that my brother would only have a matter of time to live.”

Shoby’s mother, Jan, noted, “When [the doctors] left the room I hugged my baby so tightly and cried with my tears dripping all over his baby gown. I was so terrified that my child was going to die and I could not do anything about it. I realized at this point that I need[ed] to get a grip and deal with this head on. Coming from a big Asian family who are extremely tight knit, I called my family and my cousins. Within moments, all of them were at the hospital and my family overtook the ward.”

 

Common Challenges Faced by Families Affected by Cancer

Studies have shown that patients face many challenges while managing a cancer diagnosis, including financial, social, communication, and logistical barriers.¹ In one study, researchers found that problems with medical communication and lack of social support affected 50% of the patients.¹ Such examples include reluctance to ask questions or share problems with the medical team.¹

These barriers were also experienced by both Jen’s and Shoby’s families. Jen describes how her cancer case was unique and required a tremendous amount of her time and self-advocacy. “One of the biggest challenges during treatment was navigating the process. While I was ok because I’m a nurse, other people might not be,” said Jen.  “For somebody who doesn’t know anything about health care, I can imagine them getting so lost and so overwhelmed in the system.”

The Need for Educational Resources and Support

Shoby also expressed feeling lost and confused, explaining  that her brother’s diagnosis was not explained to her in a way she could understand. “Although I can vaguely remember the doctors trying to explain what was wrong with my brother, my understanding of his cancer was that it was blood related, as it was all too technical for me at the time. I thought that his blood was poisonous. It wasn’t until my aunt Sindy… gave me a  book with Medikidz characters explaining Leukemia that I got a better understanding of what the cancer was.” When asked what resources she wished she had when her son was diagnosed, Jan said,  “I wish that there were some simple books or pamphlets I could have been given to know about the disease, books to explain to my daughter what her brother was going through and what she should be expecting.”

In addition to the communication and logistical challenges they faced, their stories also highlighted how a cancer diagnosis not only affects the patient, but the entire care circle. Jan expressed the guilt over her son’s diagnosis, “I felt as though I was the cause of his sickness and that my genetics contributed to his disease. I questioned whether I could have done something to avoid this — was it because I heated his milk in the microwave?  Was it because I didn’t feed him the right foods? For my daughter [Shoby, who was attending school], I could not focus on her and her homework.” Shoby explained, “I think the biggest challenge for me as a kid during the time was feeling lonely. At the time, I felt as though my brother always got all the attention and I felt left out, I wouldn’t have anyone attend my school plays, or drop me off on my school trips.”

Jen also noted how her cancer  required non-stop support from her family —  taking her to all her appointments, setting up a fundraiser to help with costs, and having her sister sleep in her room every night  to make sure she was okay. “I would have never survived without that support,” Jen said.

The Road Ahead

The stories of Jen, Shoby, and Jan all speak to how a cancer diagnosis marks one’s life, and how the impact can be the catalyst of change. At Jumo Health, many of the team members have a personal medical story that led them to the field of health care. In fact, for two team members, it was a family cancer diagnosis that led them to careers in health care. For Kevin Aniskovich, President and CEO of Jumo Health, he started his career in health care when his mother was diagnosed with cancer. For Sindy Nathan, Area Vice President of Strategic Solutions, it was her family (Shoby, Yadev,  and Jan)  that inspired her career trajectory —  making her want to bridge the communication gap and provide resources that explain medical conditions in a way the entire family could understand.  For Shoby, the frequent trips to the hospital during her brother’s treatment and seeing the work the doctors did to save her brother’s life inspired her to give back. She is currently studying to get her Masters in Global Health. “I feel as though it is my way of giving back to the community,” she said.

When asked about what they would recommend to other people affected by cancer, they spoke to the need for  support and talking with other people with cancer.  As Jen said, “[Patients with cancer] are literally the only people on planet earth that know what you are or are about to go through. Not the doctors, not your friends, not your family, not your therapist, not your coworkers.  Other cancer patients — those people will be your best ally.”

So today, we celebrate the lives of those who have been affected by cancer, recognizing their stories of triumph, loss, perseverance, and resilience. Thank you to Jen, Shoby, and Jan who fearlessly shared their stories so that others going through a similar circumstance can know they are not alone.

It’s stories like these that led to the founding of Jumo Health and that keep us striving to provide authentic, relatable resources during the most pressing times. At Jumo Health, we provide age appropriate educational resources for patients and their care circle for use throughout their medical journey. We work to ensure that regardless of age, educational attainment, or socio-economic status, patients and their entire care circle can understand and act upon  a medical diagnosis and treatment plan. To learn more about our solutions, visit blog.jumohealth.com/solutions. Find more information about our Oncology resources, here.

 

Source:

1. Harden S et al. Patients’ barriers to receipt of cancer care, and factors associated with needing more assistance from a patient navigator. J Natl Med Assoc. 2011; 103(8):701–710.

by Ryan Zanardi

Testing for COVID-19

Want to download this infographic? Click here. For more COVID-19 resources, visit our COVID-19 Resource Center.

For more guidance and resources, check out these helpful resources from the CDC:

• Testing guidance
• COVID-19 symptoms
• How to prevent the spread of COVID-19

by Ryan Zanardi

A Salute to Nurses

Nurses — their commitment, contributions, compassion, and care — play a critical role in our health care system. With over 4 million registered nurses in the United States, it’s likely that we all have someone in our lives who has answered the call to care for others. In honor of National Nurses Day, we spoke with a few nurses who are close to our hearts here at Jumo Health. We asked them to answer some questions about what led them to nursing and what being a nurse means to them. Here’s what they had to say…

Amanda Altieri

What made you become a nurse?

I wanted to become a nurse after many summers volunteering at a pediatric cancer camp. I felt that the bond between our campers and the nurses that took care of them were so important and I wanted to help people in that same special way. One of my aunts who was a part of the original medical staff at the camp was a major cheerleader in my career path too!

What do you love about being a nurse?

Even though I am not a pediatric nurse which was the driving force for my second degree and career change, what is so amazing about nursing is that there are so many different avenues for one career. I ended up in the Operating Room and am on the cutting edge of technology and innovation in the medical field.  I’m responsible for so much and the patients put their trust in our team while they are on the operating room table. During this COVID-19 crisis, I was able to help deliver babies in labor and delivery, and assisted on a C-section for my longest friend from kindergarten — it was amazing!

What are 3 words you would use to describe the work you do?

Transformative, healing, and innovative.

What is a phrase or quote that keeps you going during difficult times?

Have some fire, be unstoppable, be a force of nature.

Kristie Heimerle

What made you become a nurse?

I wanted to help people.

What do you love about being a nurse?

I love taking care of people and their families.

What 3 words would you use to describe the work you do?

Rewarding, compassionate, and challenging.

What is a phrase or quote that keeps you going during difficult times?

When it rains look for rainbows, when it’s dark look for stars.

Kristi Pfohl

What made you become a nurse?

I started in retail management and my three sisters were all nurses.  I liked to hear their stories and wanted to make a difference in people’s lives, so I went to night school and got my degree.

What do you love about being a nurse?

I love working with patients and helping people.  I also enjoy the flexible hours when raising a family and being  able to schedule around my children’s activities.

What are 3 words you would use to describe the work you do?

Challenging, rewarding, and important.

What is a phrase or quote that keeps you going during difficult times?

I always feel that the “difficult times will pass” and the camaraderie with my fellow nurses will pull us through.

Want to learn more about the hospital team? Check out this resource from our team!

by Ryan Zanardi

A Discussion on Innovation in Clinical Trials

Jumo Health Participates in a Tweet Chat with Experts in the Industry

Today is International Clinical Trials Day. To celebrate, we participated in a tweet chat with our friends at Eli Lilly and other experts in the industry about how innovation is taking hold in clinical trials. The conversation focused on how innovation should be centered on the patient and the importance of practical solutions that solve for the core issues. Read below for some of our thoughts on the topic in 280 characters or less…

Question 1: How would you define “innovation” when it comes to clinical trials?

Thought #1: Innovation is intended to ease a burden or solve a problem. Jumo Health innovates by providing solutions that work the way people live. We do this to ensure mass appeal and broad utilization. Without this, innovation is simply fodder for textbooks.

Thought #2: All innovation in clinical trials should be centered around the patient. While some may think AI, at Jumo Health, we address core issues that prevent optimal outcomes and focus on age appropriate resources to overcome health literacy challenges.

Thought #3: A practical approach to innovation matters because the stats don’t lie. ~85% of all clinical trials experience delays. 50% of adults can’t read above an 8th grade level, and non-compliance hovers ~70%. Innovation should focus on the root cause.

Thought #4: Our definition of innovation is embodied in our product design and through a range of age appropriate offerings from comic books to animations — all of which are intended to allow patients to understand and act upon their health care instructions.

Question 2: What recent innovations have you seen that have created a more patient-centric clinical trial experience?

Thought #1: The paradigm shift of placing patients at the center of product design is finally taking hold in clinical trials. Will this innovation make an impact on increasing health literacy? If so, then achieving optimal outcomes and compliance is right behind.

Thought #2: The informed consent process is broken. We love when organizations take steps to produce materials that augment the med-legal requirements with patient-friendly, engaging, and actionable resources.

Thought #3: We applaud organizations that take a patient-first approach. Our friends at Eli Lilly used mixed media resources, tailored for each age cohort, to break down complex medical information and make the unknown less scary. Check it out here.

Question 3: CISCRP’s 2019 Perceptions and Insights Study found that technology is playing an increasingly larger role in clinical trials. What technology do you think has been the most impactful for the patient experience?

Thought #1: Even though the study was fielded before the COVID-19 pandemic, the future role of tech in patient-centered health care is tricky due to HIPAA and GDPR, and further complicated by those who are traditionally underserved without access to certain tech.

Thought #2: ePRO, eCOA, and telemedicine solutions have taken positive steps in the space to help increase access and ease the day to day. The platforms also require best in class educational resources to become a stronghold.

Thought #3: Virtual reality is just starting to play a role. Long study visits often increase the patient’s fear and anxiety. The immersive experiences provided help calm and distract participants while supporting overall well-being.

Question 4: How can innovation lower barriers to participation in clinical trials?

Thought #1: Innovation is not a panacea. Fundamental educational deficiencies plague the health care industry. To push  clinical trials forward using tech such as IBM Watson, we need to ensure patient-friendly materials are at the forefront of the experience.

Thought #2: Allow for a patient-friendly informed consent experience. Period. As study protocols become more complex, the onus is on us to ensure patients and caregivers can understand what is being asked of them. This upfront step will reduce dropout.

Thought #3: Informed consents are typically written at an 11th grade reading level; yet 50% of adults can’t read above an 8th grade reading level. 35% of people who dropped out of a clinical trial found the informed consent difficult to understand.

Thought #4: Businesses that reach out to the community physicians to ensure those traditionally underserved can benefit from novel approaches to treatment such as Elligo Health.

Thought #5: Mixed media resources that are available in the community will  ensure that every patient, regardless of educational attainment or socio-economic status, can understand, manage, and own their own health.

Question 5: What is an innovation that you’re hoping to see in clinical trials in the near future?

Thought #1: Enterprise tech such as IBM Watson shows promise but in order to more effectively impact patient care and outcomes, we are bullish on basic building blocks such as data analytics to identify key inflection points and customer service platforms.

Thought #2: Wearable devices that can help track a participant’s progress, send reminders and positive notes, and allow for easier communication between participants and site staff.

Thought #3: Customer service platforms! Treat a participant like a consumer. Innovation doesn’t need to re-invent the wheel — it often just needs to apply decades of learnings to health care.

Thought #4: Actionable patient resources! We are committed to solving the fundamental challenge that plagues the point of care by delivering patient-friendly, evidence-based, and peer reviewed resources.

Thought #5: A greater focus on pediatric trials both related to the RACE Act and among all disease types.

Thought #6: Expanded health literacy! We see a future where the statistic that 90% of the population are health literate — acting upon their physicians instructions to meet their end goals.

Thought #7: Solutions that bridge relationships between patients, the site staff, and the larger clinical trial community. Patients want a sense of connection and to be appreciated for their participation.

by Ryan Zanardi

We Are Jumo Health: Columba Quigley, MD

An Interview with Editor in Chief, Columba Quigley, MD

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 Columba Quigley, MD, Editor in Chief of Jumo Health. Columba has been a member of our team for nine years. Her expertise and wisdom has proven invaluable not only to the work we create, but also to her colleagues who seek her guidance. Meet Columba!

What led you to Jumo Health?

My background is in medicine and I worked as a hospital-based physician for many years. Over that time, I became increasingly interested in the language of medicine, in how we communicate stories of illness, and also the gap that seems to exist between “medical jargon” and a patient’s understanding. Initially, I studied the language of illness from an academic perspective, becoming a humanities scholar in the field. One of the areas I was specifically interested in was the world of graphic medicine — the power of that specific visual and verbal format to uniquely communicate stories of illness.

 

What is your favorite part about working at Jumo Health?

What we achieve: making the confusing less so for a potentially vulnerable audience; who I work with: an amazing team that is both creative and compassionate, and fueled by a similar passion.

What motivates you?

The belief that I might be helping those who are ill and at the same time confused and anxious about their medical condition and what they might be facing. Also, I believe that “knowledge is power” and if we can help people understand their illness and why they need to comply with prescribed treatment regimes, then their clinical outcome may actually significantly improve.

 

What is your proudest achievement at Jumo Health?

Increased focus on health literacy. By working to ensure that our resources are truly literacy sensitive and truly accessible to and understandable by our target audience.

What are you most excited about for the future of Jumo Health?

Having witnessed the company achieve so much over the past years, I am really excited about its potential to realize even more achievements in the health care space.

If you could do any other job for one day, what would it be and why?

Be a concert pianist. Because it might transport even one audience member to a place of (albeit transient) sublime joy.

 

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

Humility.

 

Finish this sentence, I am happiest when…

I happen upon random and unexpected moments of joy.

 

If you want to learn more about Columba, you can connect with her on LinkedIn. Want to work for Jumo Health? Check out our career opportunities!

by Ryan Zanardi

What is a Virus? Our Resource Helps Explain

During this trying time for our global community, it’s safe to say one word on everyone’s mind is “virus.”  But, where to turn for safe, reliable information that you don’t need a white coat to understand can sometimes be difficult.

At Jumo Health, we create highly visual resources based on the latest medical research using storytelling to explain difficult medical concepts. With such an influx of information being relayed from all directions surrounding the coronavirus and COVID-19, it can be helpful to take a step back and start at the beginning. We have a number of resources relevant to the current pandemic.

To start with, our title on infections addresses a key question that may not be the first to come to mind, but is particularly relevant: what is a virus?

It can be difficult answering even this simple question for kids. Understanding Infections addresses this difficulty by creating an engaging adventure story around the medical facts, in a language and style that engages and entertains while simultaneously educating. As the fictional “Mediland” becomes “invaded” by germs (a narrative that resonates with what the world is currently experiencing) two of the resident superheros (the “Medikidz”), Axon and Abacus, explain what infections are and the different types of causative germs, including the type on everyone’s minds.

As the story continues, the Medikidz proceed to explain various types of infections, from the common cold to more serious conditions, such as meningitis. How infections can be treated and prevented is also explained.

The book ends with the most important message of all— the best way to prevent infections is through regular and thorough handwashing. The current pandemic has highlighted the fact that how we have been washing our hands to date generally falls well short in terms of preventing the spread of disease. Understanding Infections includes a full page visual step-by-step guide on how we should be doing this critical infection prevention measure.

Understanding Infections answers simple questions that our young audience ask and can relate to. Arming oneself with facts and thereby influencing health behavior is very much at the core of the Jumo Health ethos.

Read our Understanding Infections book here!

by Ryan Zanardi

A Letter Concerning COVID-19

Dear Friends,

Like all other companies, Jumo Health is actively monitoring the COVID-19 situation. As a global organization, we are keen to protect our employees, their families, and our business commitments to clients and their patients during this time of uncertainty.

On March 10, 2020, we activated our business continuity plan (the “Plan”) which places into practice standard operating procedures during times such as this. The purpose of the Plan is to:

•       protect our employees and the broader community,
•       mitigate the anxiety often associated with the unknown, and
•       maximize productivity and minimize disruption for our clients

Ensuring that our employees work from a space where they feel safe permits us to collectively serve our clients and their on-going needs without interruption. Our Company is used to working across time zones and in remote situations with team members and clients alike. Our secure video conferencing capabilities, HIPAA-compliant cloud storage systems, and adaptive culture allow us to provide the same value and work ethic today that led you to select us to serve your business needs previously.

To Our Clients
We have planned for such an occasion. Our supply chain is intact and our production teams are fully operational. We are prepared and positioned to weather this storm with you.

Our agile response system allows us to produce the most pressing resources as efficiently as if we were all in the same building. For those with current projects, we appreciate your continued commitment to the patients and their care circle that require your services. We agree that it is prudent to persevere through this trying time to ensure we are ready without delay when we can successfully flatten the curve.

While no one could have guessed that a coronavirus would lead to our business continuity plan being successfully activated and managed, we are grateful that all team members in the United States, England, South Africa, Italy, and New Zealand are safely working from home without any disruption in productivity.

As always, we remain at your disposal.

Being Present in our Communities
Being a good corporate citizen has taken new meaning here at Jumo Health. Our strength is our people. From donating meals to local food banks and soup kitchens, to organizing grassroots campaigns to donate personal protective equipment like masks, our people have stepped up to play their role in serving our communities.

In addition to our employee contributions, Jumo Health will be providing newly released COVID-19, hygiene, and other related resources to hundreds of hospitals at no cost.

Looking Forward
The COVID-19 pandemic has presented us with a challenge we all endeavor to overcome. As the situation continues to unfold, we are reminded to be grateful for the allied health professionals who show up each day to treat the sick, for those working at pharmacies who keep needed medications readily available, to restaurants and grocery stores that keep us fed, and the countless others that place the many before themselves.

While the unknown continues to outpace that which we know with any certainty, the Jumo Health family remains confident in our resolve as a people, bullish on our industry’s ability to self correct, and excited to see this new normal shape our future.

Jumo Health is here today and ready for tomorrow. Stay safe and healthy and let us know how we can help.

Thank you for your continued trust and support.

Kevin Aniskovich
President & CEO

by Ryan Zanardi

Patient Experience: Benefits, Strategies, and FAQs

What Is Patient Experience?

Patient experience comprises all of the ways that a patient interacts with a medical provider. Both positive and negative experiences with doctors, nurses, office staff, administrators, clinical trial professionals, insurance agents, and even pharmaceutical representatives shape the patient’s overall attitude and affect health outcomes.

In order to provide high-quality, patient-centered care, it is important to cultivate an end-to-end patient experience focused on putting the patient’s needs first. We’ve put together some ideas on how medical professionals can improve patient experience in their practice.

Defining Patient Experience

Patient experience encompasses all the ways that patients connect with their health care providers. Obvious examples include formal communication with medical staff, pharmacists, office workers, and administrators. Less obvious examples might include things like making sure the facility is accessible, especially during times of construction or maintenance, and preventing potentially negative encounters, such as making sure employees who smoke do not do so near the medical facility. Regularly reviewing behaviors, habits, policies, procedures, technology, and premises from the patient’s point of view will help to ensure a positive and inclusive experience.

Note that patient experience also includes the entire care circle’s experience. Patients who are unable to attend to their own medical needs – e.g., those who are young, severely ill, or have a disability – may have family members who help them with accessing medical care. It is just as important to consider the experience of engaged family members and other supporters as it is the patients themselves.

Patient Experience vs. Patient Satisfaction

Patient experience and patient satisfaction are often confused. A patient’s experience can affect the level of satisfaction, but satisfaction can also be affected by a patient’s expectations. Managing those expectations is part of the overall patient experience, and doing so effectively will often lead to higher rates of satisfaction.

Measuring patient satisfaction is not enough in itself in terms of enhancing our understanding of how to improve the patient experience. It is important to ask both qualitative and quantitative questions when requesting feedback from patients. Such feedback may not always be easy to obtain, so offering multiple ways for patients to supply comments about their experience is best. Real-time feedback has as much of a role as satisfaction surveys that may be sent out later.

5 Ways to Improve Patient Experience

There are many factors that affect patient experience, some of which may be unique to the health organization’s people and operations. At a high level, however, the following factors are some of the most important ones to consider when working to improve or maintain a positive patient experience.

1. Foster A Caring Culture

Organizational culture plays a significant role in patient experience. Culture relates to how the organization operates, including everything from the day-to-day tasks of those who oversee a patient’s care plan to the high-level decision-making process of executives or others in leadership roles. Health care organizations that focus more on the bottom line than on the experience of care will have a hard time making significant improvements.

Rethinking a health care organization’s culture – and the patient experience – can happen at any level, and organizations that encourage innovation and creative improvements will most likely experience the best benefits for their patients. Some organizations are even hiring “Chief Experience Officers” to help shift their culture to a more patient-centered approach.

2. Communicate Better With Patients

Patient communication is more complicated today than ever before. In addition to face-to-face conversations with doctors and office staff, patients may receive emails, phone calls, texts, app-based information, and even good, old-fashioned snail mail. The communication choices currently available are incredible, but they can also negatively impact the patient experience if they are not used appropriately.

Communication is important because it helps maintain a continuum of care. Some patients may only want their medical provider to send them appointment reminders and bills. Others will appreciate a wider variety of communications that provide helpful information about their own medical issues or other health concerns they may be facing. Offering communication options that meet the needs of a diverse patient population – and making it easy to find and update those options – will help improve the patient experience.

When looking at communication options, be sure to consider innovative patient education materials like comic books, videos, and podcasts to help patients understand the nature of an illness, procedure, medication, and other health topics.

3. Connect with Patients on a Human Level

Connecting with patients on a human level is a critical component of care delivery – even when those connections have nothing to do with medical care itself. Patients will generally have a more positive experience if they have a good rapport with their doctors, nurses, and other staff.

Making a human connection can happen during any interaction, from making appointments to having conversations about whether a patient will be able to pay an unexpectedly large bill. Finding a way to show genuine interest in patients as people lets them know they are valued. First points of contact are critical, but ensuring end-to-end communication with patients at every stage in their journey is just as important.

4. Address Patient Expectations

A remarkable amount of the patient experience is driven by expectations about their care. Studies have shown that quality of life is affected significantly by the gap between patient expectations and the actual care experience, and different expectations can lead to different views about their quality of life – resulting in different experiences for patients despite receiving the same care.

Setting patient expectations about their care up front can lead to a much better experience. While it is good to give patients hope and encouragement, medical providers should not over-promise or imply that a patient’s outlook is better than it really is. Likewise, when dealing with administrative or billing issues, expectations should be set up front, so that patients understand what to expect in terms of payments, insurance submissions, and related activities.

5. Ask for Feedback

Perception is related to expectation in that it requires tailoring communications to make sure patients understand exactly the type of care they receive (or are going to receive). Patients who believe they are receiving one type of care, only to receive another, may be confused, angry, and feel like the quality of care is not as good as it should be.

Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) surveys can also improve the patient experience by giving health systems important information about how patients think they are doing. Hospitals and other medical centers should use HCAHPS feedback to make quality improvements that will benefit the patient experience.

Benefits of Improved Patient Experience

Why should medical providers worry about the patient experience? Here are a few of the reasons why we should make the patient experience a priority.

1. Improved Patient Safety and Clinical Outcomes

A review published in BMJ Open looked at evidence from 55 studies to better understand the relationship between patient experience, patient safety, and clinical outcomes. The authors of the review concluded that there is indeed a positive relationship between these three factors, and that a reduction in focus on the patient experience could actually result in a  reduction in patient safety, as well as having a negative effect on clinical outcomes.

2. Less Utilization of Unnecessary Health Care

Overtreatment is a growing problem, some of the reasons for which can be attributed to poor patient experience. Patients who believe they did not receive the right type or quality of care may often seek additional care, which may not be needed and could even be harmful, depending on their medical situation. At least some patients who report a positive experience have lower readmission rates, depending on the severity of their disease.

3. A Better Relationship With Disease

Finally, from the patient perspective, a positive experience can help patients better cope with the realities of the medical issues they are facing. Particularly for those facing a poor prognosis, positive patient experiences can lead to a better quality of life by helping the individual focus on supportive or palliative care, rather than on negative experiences with their medical provider.

by Ryan Zanardi