I am not particularly fond of acronyms but this one is very close to my heart. EDI stands for Equality, Diversity and Inclusion. It brings to light the importance of including all the ethnic, social, age and gender-based components of our modern society into all our human activities. The concept, in one form or another, has been debated for years but for the ever conservative healthcare world (and by consequence the clinical trial sector), this basic preoccupation is fairly recent.
Why is it important?
It will improve public health
Numerous studies have proved again and again that clinical trials have been inclusion biased for a very long time. This flaw affects enrollment numbers (some patients will be excluded because of restrictive protocol design, but also practical barriers, such as the financial cost or the concentration of trials in academic hospitals). It also impacts the robustness of clinical data: for instance, type2 diabetes is more largely represented in minority ethnic groups than in the white population in the UK (Making the UK a global leader in inclusive anddiverse clinical trials, Advancing Clinical Trials, March 2023) but these groups are paradoxically underrepresented in trials. Making clinical trials more diverse and inclusive will end up improving public health, which is, after all, its primary mission.
It reflects society
Because if we want to increase clinical trial participation (and it needs to grow, in view ofbooming trial numbers), it needs to be better integrated into society. In a word, clinical trials must be diverse because they should reflect today’s social landscape and its diversity.
It will potentially change the culture of healthcare professionals
To have a significant societal impact, EDI would need to be embedded into the trial ethics approval process, for instance. This official recognition of EDI as a major component of any clinical trial has the potential to instill new working methods and eventually a new work culture in healthcare professionals. It places the whole sector at the forefront of social evolution, with a hopeful ripple effect on other fields of activity. The life sciences sector is by definition looking to the future of mankind. Wouldn’t it be logical that it takes on a pioneer role in diversity and inclusion as well?
It will strengthen political support
Let’s notbe naïve about it: EDI is strongly present in political considerations. Integrating its principles into life sciences would make the trial sector a flag bearer of social rights and help gain precious national and European political support towards its development.
It will be a European USP
From a strictly business point of view, diversity obligations would also constitute a Unique Selling Point (USP) for the European clinical trial sector and boost its competitiveness worldwide. Furthermore, it also contribute to multiplying research sites beyond academic hospitals, to community clinics, for instance, which offer a wider diversity of patients.
How does the Allyfe platform materialize EDI?
Equality,Diversity and Inclusion have been priorities for Allyfe from the design phase of the platform. Honestly, I was alerted to it a few years ago by a friend with sharp business acumen who told me: “Now, some sectors still think it is one of those fads, but I am telling you: the most progressive business spheres havefully integrated it and soon it will be a sine qua non for any interaction-based activity (so, essentially, any activity!).” Because it was new to us then, we had to really ponder on the practical implications of this concept on the architecture of the platform. This is what we came to:
Digitalization and hybrid procedures
In a nutshell, Allyfe digitalizes the enrollment procedure for clinical trials. Of course, digitalization per se improves outreach possibilities, and thus inclusion and diversity: anybody can have direct access to the prescreening procedure, anywhere, anytime. Potentials participants do not need to confront medical professionals at this point, they just need to click on a link from a social media post, scan a QR code on a poster. All of a sudden, clinical trials are no longer an intimidating procedure for which you need to go to a hospital. Digitalization and remote access also make it easier for GPs, for instance, to present clinical trial opportunities to all the patients they see for routine procedures. Again, inclusion and equality.
But we are also aware that overdigitalization can be counterproductive. If you take into consideration all the aspects of equality and inclusion, you have to realize that digitalization can also put off some potential patients (and some investigators…).Which is why we have made parts of our platform hybrid: so that patients who are technology-averse can still benefit from the advantages of the platform. That is inclusivity as well. For instance, if they prefer (or if the country where the clinical trial takes place requires it), they can sign their consent form in front of the doctor rather than electronically. The investigator can also add patients onto the platform manually, integrating them to his dashboard and archiving their data electronically, but sparing them any digital difficulties.
Out of reach populations
Let’s mention that the digital platform also gives a voice to legal representatives and parents of potential patients, making it easier for these usually out of reach populations to participate in clinical trials, for instance in trials about Alzheimer or pediatric pathologies.
Native language and jargon
Needless to say that the multi-language dimension of the platform as well as the systematic editing of medical jargon improves the accessibility and appeal of clinical trial participation. It is definitely more appealing to participate in an endeavor when you fully understand from the get go what your role and involvement will be and what the objective and procedure of the study is.
Last but certainly not least, our constant preoccupation is to spot and fight psychological, social and cultural barriers to participation. We are for ever trying to put ourselves in the shoes of all kinds of populations and work on theplatform’s ergonomics to make it as user-friendly, smooth and transparent as possible. We believe that making enrollment simple and intuitive is a big step towards inclusion. So is interactivity: maintaining a constant dialogue between the research team and the patients is the best way to detect barriers, obstacles, frustrations and to overcome them.
As conclusion, I would like to say that EDI is indeed a challenge, but if tackled properly and sincerely, it can turn into a powerful positive momentum for life sciences. It is at least how the Allyfe team has experienced it!