Keeping the Human Element in Decentralized Trials - MRN

Keeping the Human Element in Decentralized Trials

What’s the missing element in the clinical trial tech title wave? 

While I sat in the audience at Mobile Tech in Clinical Trials and Dpharm, Disruptive Innovations last week, it took everything in me not to jump out of my seat and yell, “This is the crux of what we do!” or “we’ve been saying this! DCT doesn’t mean Digital, it means Decentralized!” or “Well, DUH!”.  Panel after panel, presentation after presentation, we heard a similar message: The industry should give patients the flexibility to participate in a trial in nontraditional ways.  While digital capabilities in clinical trials have allowed us to provide patients with a new seemingly more convenient way to provide data, the Human element, human touch and care component of healthcare can’t be lost for patients as they are participating in clinical trials. We don’t want tech for tech sake.

Optimizing trials can be accomplished by offering patients optionality in when and where they participate in trials and should be integrated into a patient’s life and care to keep the patient involved holistically.

A patient advocate shared her experience of participating in a trial, while she spent less than one hour at the clinic, it took her over 2 hours each way to drive to the site and back. That’s a 5 hour round trip once a week to the academic institution running the trial.  Luckily for her, the site, and the sponsor, she could manage this but think about this in your own life, could you participate with that kind of time commitment? I know I couldn’t. “It was a lot and I kept thinking, why couldn’t I have done this locally” She also mentioned “I did drive myself but if I were in a worse health state it would have been an even bigger burden to have someone else drive me”.

We heard from one pharmaceutical company that they have internal initiatives to better understand and support “customers” or patients, looking at other industries like retail, travel & leisure, finance. This makes sense to me.  We should be looking at other industries, acknowledging that in some ways, patients are the consumer and our products (or protocol) need to be developed with a customer service lens. An inclusive design and an understanding of the end user can allow protocols to be designed with the customer in mind.

So, what does this mean for our industry as we look to the future? The voice of the customer and the human experience is at the core of what we do, and we must never forget that no matter how impressive the new solution may appear for clinical trial timelines and costs.  We must leverage digital technology to collect data and reduce the burden and roadblocks to participation for the patient. We must consider the impact that new technology or services have on overburdened sites and support them to continue to deliver great care to patients.

In addition, optionality and inclusive design can increase accessibility, especially with those that don’t have access to devices.  By combining the clinical aspects of a trial, through in-home healthcare professionals combined with digital technology, we can broaden what we can do for minorities, different ethnic backgrounds, women, and patients of various socioeconomic status to give them all an opportunity to participate.

So was the main take away from Mobile Tech and Dpharm this year?

No-one solution will ever be the savior for our industry, but together and by providing flexibility and addressing the needs of the patient and sites and addressing their true participation pain points, we can all make a huge difference. By putting the human experience at the center of the drug development process we can bring clinical trials into everyone’s and anyone’s backyard.

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