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.