Blog

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!

---

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

Thoughts on 2019

---

by Ryan Zanardi

Looking Back at 2019 and Looking Forward to 2020

The Jumo Health Team Recognizes the End of a Decade

 

2019 coming to a close marks not only the end of the year, but also the end of the decade! We asked the Jumo Health team to share what they were thankful for this year along with what they are most looking forward to in the year ahead. Here’s what some of them had to say…

 

Rick, Senior Vice President, Strategic Solutions

In 2019, I am thankful for my newly extended family!

In 2020, I am looking forward to our continued disruption of the industry, delivering hyper-growth for our investors, and ultimately serving patients in need!

 

Nichole, Product Manager

In 2019, I am thankful that I decided to prioritize my mental health. Finding a good therapist has been life-changing for me. #stopthestigma

In 2020, I’m looking forward to whatever new adventures may come.

 

Rebecca, Senior Director, Product

In 2019, I am thankful for my fun, funny, loving family, including the newest addition: Nellie! Old friends and new. The team I get to work with every day. Being fortunate enough to travel the world and experience new destinations (South of France!).

In 2020, I am looking forward to new adventures — this sums it ALL up!

 

Emily B, Marketing Manager

In 2019, I am thankful for summer nights at the beach with family and friends.

In 2020, I am looking forward to all the possibilities the start of a new decade holds.

 

Elyse, Senior Director, Client Services

In 2019, I’m grateful for the incredibly funny, thoughtful, curious, supportive, and loving people in my life. They continue to challenge me, be a shoulder when I need it, offer different perspectives, and give me a reason to smile each day.

In 2020, I’m excited for new challenges, experiences, and adventures.

 

Alex, Director, Client Services

In 2019, I’m incredibly grateful for the birth of my daughter.

In 2020, I’m looking forward to watching her grow, and for my husband and me to continue learning as new parents.

 

Sindy, Area Vice President, Commercial Solutions

In 2019, I am thankful for my family and friends, and our Jumo family of colleagues, clients, and patients that have made 2019 a year to remember!

In 2020, I look forward to it being the year that is bringing me a husband!

 

Emily S, Executive Director, Strategic Solutions

In 2019, I’m extremely grateful for all the unconditional encouragement and support my husband, Dayne, has given me this year! It’s so important to surround yourself with people who brighten your life.

In 2020, I am looking forward to all of the incredibly exciting things the new year is going to bring!

 

Jen, Senior Director, Strategic Solutions

In 2019, I am extremely thankful for the health, happiness, and support from my amazing husband, 3 children, parents, and village mamas. I am so grateful to have joined the Jumo Health team!

In 2020, I am looking forward to continued health and happiness, crushing new goals, and being a significant contributor to the future of Jumo Health.

 

Matt, Director, Product

In 2019, I am thankful for the wonderful, beautiful, and supportive family I have around me, especially my parents. Many of the opportunities that I have had in my life have been made possible by their love and support.  Can’t wait to see them all for the holidays!

In 2020, I am excited to be another year wiser, another year more experienced, and ready to take on whatever opportunities 2020 will bring my way.

 

Erica, Senior Medical Writer

In 2019, I am continually grateful for the privilege to watch my daughter, Emily, flourish and reach new milestones, while both defying and embracing her type 1 diabetes.

In 2020, I look forward to each new medical advancement and glimmer of hope as we take one step closer to a day without constant worry and relentless vigilance. Thank you to my Jumo family for their endless support, laughter, and friendships. I’m excited to transition to the new year as part of this dedicated team as we continue to evolve to better serve and empower people through health education.

 

Kate, Founder and Chief Medical Officer

In 2019, I am so thankful to work with a team of passionate, dedicated and driven people here at Jumo — which has meant we’ve produced such incredible and innovative programs and resources to support thousands of children and their families worldwide.

In 2020, I am looking forward to seeing more brilliant work be created by this awesome team!

 

Columba, Editor in Chief

In 2019, I am thankful for people and kindness.

In 2020, my hope is that people continue to care about each other, especially thinking about those less fortunate than themselves, and how they might reach out and help them.

---

by Ryan Zanardi

Raising Awareness for World AIDS Day

Jumo Health Bakes to End the Stigma on World AIDS Day

 

World AIDS Day is celebrated on December 1st. It is a day dedicated to uniting and fighting against HIV — to raise awareness of HIV, to break the stigma, to support those living with HIV, and to remember those who have died from an AIDS-related illness.

Fun Fact: World AIDS Day was first celebrated in 1988, the first ever world health day!

What are the Statistics?

About 1.1 million people in the U.S. are living with HIV. In the UK, 101,600 people are living with HIV. Around the world, it is estimated that 36.7 million people have the virus.

While advancements have been made in HIV treatment and prevention, it is still a condition that remains prevalent globally; thus, much can still be done to increase awareness, combat prejudice, and improve public education.

 

What did Jumo Health Do This World AIDS Day?

Raising awareness and providing education on medical conditions is something dear to our hearts at Jumo Health. We also have an affinity for baked goods. So, our London office combined passions and organized a bake sale to raise money for the National AIDS Trust in honor of World AIDS Day. Our very own, Yael Steinitz, coordinated all of the logistics and was the brilliant mastermind behind the event. And, Bruno Valasse, our very creative visual designer, created the beautifully illustrated posters.

The bake sale was a great success, with many people stopping by, way too many delicious treats consumed, and most importantly, money donated to the National Aids Trust.

For us, we believe no act is too small. We believe that, together, we can continue to fight against HIV and make an impact. So, with that, happy #WAD2019!

---

by Ryan Zanardi

Jumo Health Celebrates World Children’s Day

Jumo Health Joined PRA Health Sciences and UNICEF to Advocate for Children’s Rights to Safe and Effective Treatments

 

Thirty years ago, history was made when world leaders made a universal commitment to the world’s children by adopting the United Nations Convention on the Rights of the Child (CRC).  Over the past three decades, momentous strides have been made to improve and protect the lives of children globally.

On Wednesday November 20th, we joined PRA Health Sciences and UNICEF to celebrate CRC’s 30 year anniversary and focus specifically on children’s rights to safe and effective treatments. With 70% of medicines having never been tested on children, we know that there is a lot of work to do.

Throughout the day, we heard from different perspectives in the pediatric clinical trial space — from sites, physicians, CROs, patients, and innovators. Our very own Rick Scorzetti, SVP of Strategic Solutions, joined panelists to discuss how we can amplify the pediatric patient voice in clinical trials.

A few themes emerged throughout the discussion…

 

Patients want better communication and education in clinical trials

The message was universal. Nicole and Melanie, two Marfan Syndrome patient advocates who have been in previous clinical trials, explained that, as a child, they were never explained what the trial was and why it was important. They mentioned their frustration when they were talked over, and not spoken to in a way they could understand.

Sites noted the challenges they face during the informed consent and assent process. With the literacy levels of their patients, sites noted that they even create their own documents to help make sure patients can better understand.

The ask? Education and resources that are trustworthy, relatable, and simplify complex information. Education would help with enrollment and retention in clinical trials. It would arm pediatric patients with the tools to be their own self-advocates and make informed health care decisions. It would help patients stay motivated in the clinical trial because they would understand the why.

 

Patients and caregivers want more connection in the clinical trial process

The discussions centered on the importance of making participants feel a part of the clinical trial process and actively show appreciation for their participation. One person remembered a recent story where a patient shared that while the clinical trial experience was positive, this patient was never thanked once.

One patient stressed that currently clinical trial protocols are written with only end results in mind, and not with the experience of the patient in mind. When asked what she hopes for the future of clinical trials, she said “connection” — to make those involved feel connected to the study and bridge relationships between all trial stakeholders that will extend beyond the study.

 

Patients want fewer hospital visits

One parent explained the challenges she faced managing the visit schedule with her career. With a lot of families having to commute to the site, it often requires for the parent to take time off work to make it work. Consolidating in-person visits would alleviate some of the pain points felt by families. The group talked about the potential of virtual visits and other technologies, like wearables, to provide a solution.

 

Jumo Health is committed to provide personalized health care experiences that give patients and caregivers the foundation for success. To learn more about Jumo Health’s clinical trial solutions, click here.

---

by Ryan Zanardi