STYLISA FoundHers: Dr Giovannie Jean-Louis on Giving Communities a Voice in Clinical Research

What happens when lived experience meets innovation? You get PROBr, the bold and brilliant platform created by Dr Giovannie Jean-Louis. At just 28, Giovannie is already transforming how underrepresented communities engage with clinical research. As a neuro physiotherapist, founder, and woman of Caribbean heritage, she has seen first-hand the systemic exclusion in healthcare that leads to misdiagnoses, ineffective treatment, and preventable deaths. Her response? Build something better. In this powerful interview, Giovannie shares the personal ‘why’ behind PROBr, the pushback she’s faced, and her vision for a healthcare system that’s inclusive, human, and shaped by the voices too often ignored.

Dr Giovannie Jean-Louis is on a mission to make clinical research more inclusive, accessible, and community-led.

Let’s begin with your ‘why’. What inspired you to create PROBr, and how did your background as a neuro physiotherapist shape that decision?

The inception of PROBr, now reflecting was not a matter of an idea that came so easily or a matter of looking for a “great” idea. This idea came with layers of unanswered questions and frustration. Having to deal with death in my family held this burden that I needed to do something. The start of the idea finally came when I was asked by my special needs students’ parents to find them clinical trials to join. I did a quick google search and was surprised that there was not a platform or a website dedicated to their conditions. So, I thought that I should create a matchmaking tool. Over the months and years of refining PROBr’s purpose, I found that the health disparity gaps amongst ethnic minority groups needed to be addressed, which helped me make PROBr more than just a matchmaking tool.

You’ve spoken about exclusion in healthcare research. Can you share a moment that really crystallised this problem for you?

When I did my research during the early idea development of PROBr, I found out that less than 6% of all research studies have people of colour. That stat alongside fatal conditions that affect Black and Brown communities (such as Diabetes, Prostate Cancer, Lupus, etc), made me realise that if we do not get involved in research soon, we will be seeing these effects in the younger generation continuing this vicious cycle of ineffective treatments, mistrust, and miseducation.

PROBr is such a bold and necessary platform. What were the biggest challenges in building something so pioneering, and how did you overcome them?

One of the biggest challenges was getting the credibility and backing I needed from people already established in the industry. I had mentors who discouraged me from pursuing this because, in their words, “there are already platforms like yours.” Even some investors questioned, “Why build this when others exist?”

But my response was always the same: If those platforms truly worked, why are they unknown to the very communities they claim to serve? Why do underrepresented groups still feel left out of research? The truth is, many of those platforms are led by teams that don’t reflect the communities they’re trying to engage. Their C-suites are often white and male preaching about diversity without living it.

Overcoming that doubt wasn’t easy. I’m a solo Black woman founder in a space that often doesn’t make room for people like me. But I kept coming back to my why. I didn’t build PROBr out of boredom or for profit, I built it because I believe underrepresented communities deserve to be at the table from the beginning where research, treatments, and policies are shaped.

The name PROBr is brilliant. What does it stand for, and what do you want people to feel when they hear or see it?

When I came up with the name, I had many things in mind. I needed something short and memorable but also meaningful and maybe even witty. PROBr comes from the word probing which is defined as “inquiring closely into something; searching”. And essentially that is what my research platform encompasses. Being curious, wanting to join research studies, creating research studies. Recently though, I had the reassurance that I picked the right name because I came across the word “Probity” which means- “the quality of having strong moral principles; honesty and decency”. That definition encompassed PROBr’s values and how we want to be perceived as a platform to our users.

There’s a lot of mistrust around medical research in underserved communities. How is PROBr helping to rebuild that trust?

We’re rebuilding trust by first meeting people where they are. That means listening to their reasons for not joining studies, whether it’s a lack of understanding, fear, or simply not knowing how to get involved. PROBr proactively educates our community on the basics of research and openly acknowledges historic injustices that created mistrust, like the Tuskegee Study and the story of Henrietta Lacks.

As a Black woman, former patient, clinician, caregiver, and someone who understands the cultural nuances of mistrust, I bring a lived experience that resonates. I let people know, “I see you. I understand.” Because the only people who truly understand being black are black people. The only people who truly understand being underrepresented are those who are underrepresented themselves.

Your platform gives people choice, access, and a voice. Why are those three things so vital when it comes to research and healthcare equity?

Autonomy is everything. I spoke about this in an interview with Dr. Harvey Kennedy-Pitt on his UnStukk series that when people have choice, they feel seen, respected, and empowered. In healthcare, I’ve had patients refuse effective treatment because they felt their voice wasn’t part of the decision. They would rather suffer than lose the ability to choose.

Access is about equity. Just because everyone starts at the same line doesn’t make the race fair. Some communities have systemic barriers that push them ten feet behind,  equity means adjusting for that.

As for voice, that’s how people shape the system. On PROBr, participant input isn’t just welcomed. It informs how we build. We have implemented an important component to our platform which is PPIE, which stands for Patient and Public Involvement and Engagement. It’s a way for people especially patients, carers, or members of the public to be actively involved in shaping research, without having to be research participants themselves.

Instead of taking part in a clinical trial, a PPIE contributor might:

• Help researchers design better studies

• Give feedback on how questions are worded

• Advise on how to make the study more inclusive or relevant

• Review participant information to make sure it’s clear and respectful

• Even sit on advisory panels to guide decisions

Let’s say a research team is studying a new diabetes management app.

Instead of just testing the app on people, they bring in Lisa, a woman living with diabetes, as a PPIE contributor. Lisa doesn’t test the app instead, she gives input on:

• What features matter most to people managing diabetes daily

• Whether the language in the study is clear and respectful

• How the app might need to be adapted for different communities

Her lived experience shapes the research before it even begins helping to make it more useful, ethical, and people-centred.

Dr Giovannie Jean-Louis showcases the PROBr app, designed to connect underserved communities with inclusive clinical research studies.

You’re not just tackling a problem, you’re reimagining the system. What kind of feedback have you had so far from users or researchers?

The feedback I had from both has been encouraging! The participants/patients were stunned by the design but also the functionality of the platform. So many ask me when will the app be released, because they want to use it right away and share it with their friends and family. The same goes for researchers. They want to use it to start putting out studies and reaching a larger pool of diverse participants. I even had a few people say, this will be the biggest research platform in the world. And now, that is my mission to make their words and my dream come to life.

Healthcare innovation can be tough to navigate, especially as a young, Black female founder. What’s helped you stay grounded and motivated?

What helped me stay grounded and motivated were the words of my late mum which is “Keep Going”. Aside from praying and going to church, I had to lean on my close friends who have been there for me during this crazy rollercoaster of a journey. But I also leaned on myself and my ability to be the chosen one to make this innovation one to stay.

You’re 28 and already building something game-changing. What have been the biggest lessons for you as both a founder and a healthcare professional?

The biggest lesson is that there’s no formula, and no one has it all figured out. I used to think the journey would be linear, maybe with a few squiggles here and there. But it’s more like organised chaos. Even the “experts” don’t always have the answers.

I’ve learned to embrace change as it brings clarity. And I’ve learned to talk to people,  lots of them. It breaks bias and brings perspective. Hearing other people’s stories helped me understand my own purpose better.

There’s still so much work to be done when it comes to diversity in clinical research. What systemic changes would you like to see, and how can others support that vision?

One of the most urgent changes I want to see is the reduction of medical gaslighting where healthcare professionals dismiss or minimise a patient’s concerns, often leading to misdiagnosis or delayed care. This is a deeply rooted issue, especially for Black communities.

It’s one of the main reasons why many Black people avoid seeking medical care until it’s a last resort. And usually, that is when it is too late.  It’s also why Black women are three to four times more likely to die from childbirth-related complications because their symptoms and pain are too often not taken seriously.

Fixing this requires a collaborative, systemic effort. Clinicians must be trained to recognise their own biases and hold one another accountable. At the same time, patients need to be empowered to self-advocate or have someone by their side who will. Whether it’s a friend, family member, or digital community like PROBr, no one should navigate the healthcare system alone or unheard.

We have a space on PROBr called Speak My Truth where you can share your experience of being gaslit and we turn it to a quote which we post on our social media page for other to see. You can submit an anonymous quote at: https://www. probr.co/speak-my-truth-1

What advice would you give to anyone, particularly women of colour, who want to launch their own platform or product in the healthtech space?

Do it. Don’t let other people’s fear or small thinking dim your vision. Being a woman is already seen as a challenge in this space. However, being a woman of colour amplifies that. But don’t shrink.

If your initiative is rooted in purpose and passion, it will work. Maybe not in the way you first imagined, but in the way it’s meant to. Whether it launches exactly as planned or evolves into something new, it will lead you closer to your purpose.

How can people get involved with PROBr whether they’re interested in participating in research, spreading the word, or supporting your mission through investment?

The best way is to sign up to our launch waitlist on our website which is https://www.probr.co That way you will be notified when our app is officially released and you can start joining studies right away! As for investment, if you find that what we are doing aligns with you, feel free to contact us a info@probr.co and query about investment. We are always open to investment.

And finally, what’s next for PROBr? Where do you see the platform in five years, and what impact do you hope it will have?

Right now, we’re raising investment,  but not just from anyone. We’re looking for aligned investors who believe in changing the status quo and putting inclusivity at the heart of health innovation.

In five years, I see PROBr as the go-to platform for research participation in the world. The place you go if you want to be part of change, or the tool every researcher uses to solve their recruitment and project delivery challenges.

My hope is that PROBr helps people trust research again. If even one life-changing treatment, policy, or device comes to life because PROBr helped the right people connect. I’ll feel like I’ve already made a lasting impact.

A massive thank you to Dr Giovannie Jean-Louis, for being part of my STYLISA FoundHers series. And if you’re interested in finding out more about Jane's work, do connect with her directly on LinkedIn: https://www.linkedin.com/in/dr-giovannie-jean-louis-699211102/

Visit the PROBr website - https://probr.co