The Quest for Data – And Privacy

Much has been written about the need for better data collection in the pharmaceutical industry. For clinical trials this is especially important – as the data collected is of upmost importance to advance the drug through subsequent trials and ultimately to approval.

As data is collected from real, live people, it is essential for clinical trial sponsors to ensure the data is collected, analyzed and properly archived.

But, even as the data is collected, clinical trial sponsors have another issue to deal with, and that’s keeping clinical trial participants enrolled and engaged in the process.

This is especially true now – as many trials are done outside of clinics. Clinical trials done outside of clinics offer many advantages to sponsors – such as lower costs for both personnel and facilities, but also present additional problems – one of the biggest is clinical trial fatigue.

Clinical trial fatigue, as the name implies, occurs when participants lose interest in participating in the trial.

This can range from not taking the drug under investigation according to directions, to not properly and promptly entering data, to completely abandoning the trial.

As a large amount of time and money is spent on recruitment for clinical trials this is a big problem.

Adding to this list of potential fatigue-inducing issues is the topic of privacy.

For better or worse, we all have devices that seem to be listening to us at all times. Waiting patiently for use to shout “Hey XXXX” and then respond with the answer we need.

Add this active listening to the passive listening and you end up with a privacy concern.

For example, on numerous occasions I have found ads served to me on either my smart phone or laptop based on conversations I’ve had in front of these devices – or seen ads served on one device that I interacted with on another.

Are the devices actually listening? How does this happen? Is it a bit creepy to see it happen? Yes, definitely.

So, what happens when a clinical trial participant, in for example, a trial for a new cholesterol medication, starts seeing ads for Lipitor or Crestor?

Do they freak out, do they drop out of the trial?

I’m not saying this has happened yet, but it could happen.

Is there an answer to this problem? Can clinical trial sponsors ensure the privacy of their participants?

Let me know what you think.