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Helping patients fight for their lives – Collaboration, not just decentralisation

By November 30, 2023No Comments

In the place of our usual monthly mdtalk, we recently hosted a very special, industry-first event: a round table webinar of experts to discuss the issues and talking points around decentralisation in clinical trials.

Instead of the usual industry agenda topics of logistics and practicalities driven by Sponsors and Sites, the round table focused on the patients and what they needed from the industry.

Host, our COO, LaQuinta Jernigan, was joined by:

  • Jameka Hill – Senior Director of Clinical Trial Health Equity at Moderna
  • Christine Daniels – Cell Biologist at Ask Bio
  • Eric South – President of the Gladiator Project
  • Megan Liles – Vice President of Clinical Operations at ProKidney Corp

By gathering representatives from the patient community, sponsors, sites, and clinical operations for the very first time, we were able to debate our common challenges and discuss how we can genuinely move the industry forward with the patient at its heart.

I was inspired by how our round table approached the same old industry challenges of recruitment and retention from a fresh perspective.

Help patients fight for their lives practically and emotionally


Awareness that a clinical trial even exists for your condition is the first barrier. The moment a patient hears of their condition for the first time can be a hugely stressful and overwhelming time and a pivotal moment in the clinical trial experience.

This is something that comes up repeatedly when we’re talking to patients and was also identified as a key moment in our recent report.

It’s such a crucial time for patients to think about all their options, and it’s clear that the clinical trials industry isn’t a meaningful part of the care discussions yet. We need to offer patients another option and not just be a clinical afterthought.

Jameka summed up the challenge perfectly: “The efficacy of the solutions we’re trying to create depends on having a patient community to work with, so having an effective and easy way of getting information out to the relevant patient populations – in formats that are accessible to all – is vital.”

And not just awareness but advocacy

Eric said: ”I don’t think there are enough people advocating patients, supporting them in what could essentially be a fight for their lives. There are several online resources, Facebook communities, patient support groups, and charities out there that do what they can with their very limited scope, but they feel disparate and disjointed. How can there be a proactive, positive presence for patients from the moment they’re given a diagnosis?”

This was a light bulb moment for me. Let’s make it easy and obvious for patients to find the information that’s relevant to them. If awareness is the first step, the next is patients feeling a sense of advocation; for them to feel informed, supported, and empowered.

Let’s create a proactive, centralised structure accountable for the advocacy of patients and clinical trials.

Travel and logistics

The group discussed how maddening it was for patients to be travelling for days for care, when potentially suitable facilities were available in the next city.

Logistics is something the industry needs to be better at. For example, if a trial requires imaging, traditionally, patients travel to site for appointments. But what if a facility with the same equipment is closer to your home?

Of course, the quality of the data needs to be protected – but surely it’s possible to generate excellent data with the same equipment only minutes away as opposed to hours?

This was a real reminder that more comprehensive regulatory guidance on capturing data decentrally has to be a part of clinical trial evolution.

And while we’re talking accessibility, let’s talk about appointment flexibility. Most sites are open 9am – 5pm, when most participants might be working. Surely being able to offer patients flexible appointment times that accommodate normal life might just encourage more participants to join and stay within a trial?

Cultural understanding – the DCT is not a silver bullet

We all agree that many aspects of a decentralised clinical trial (DCT) meet patients’ needs beautifully, but we can’t make assumptions for every patient.

Jameka said: “We have experience of some cultures not wanting healthcare professionals (HCPs) to undertake procedures in their homes or places of work and, although it’s harder, travelling to a trial site has for them been preferable. We have to understand that one size does not fit all.”

Collaboration is the key to evolution

As an industry, we have some work to do!

We have to break out of our industry silos and work together. Accepting that individually, Sponsors, Sites, Patient groups, and Patient services don’t have all the answers and that we’re greater than the sum of our parts is the first step.

The next three steps could be revolutionary:

  1. Let’s establish a collaborative resource or advocacy network that can centralise clinical trial information
  2. We must work together to create flexible protocol frameworks involving clinical operations teams, med-tech developers and connect the dots between operations and data to create amazing patient experiences
  3. Let’s be humble; let’s remember why we’re doing this – we’re not just looking for a clinical answer; we’re asking other humans to use their bodies to help us find it

We’re helping patients fight for their lives, lets do that properly.

A huge thank you to Jameka, Christine, Eric, and Megan for joining LaQuinta for our mdwebinar and inspiring us to take a step back and think smarter about how we can evolve this industry.

But what do you think the industry needs to do to evolve the clinical trial?

Let’s keep the conversation going; tell me what you think should happen next on Twitter or LinkedIn.


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