A clinical trial from the patient side during COVID-19

18 Jun, 2020

Insights from our Chief Product Officer — Per Nilsson

Me as a patient sitting for tests during the clinical trial visit.

At Pilloxa, we are bringing digital and patient-centric solutions to clinical studies. My job makes me very curious about the healthcare industry, and it was therefore thrilling for me to experience a clinical trial firsthand last month in the midst of a pandemic unlike anything we have seen during our lifetimes.

I want to take a moment to express our gratitude for healthcare personnel who have been working so hard these past few months. This article is to shed light on my personal experience during a clinical trial and to showcase that there is still a lot of potential for further improvement, especially when it comes to being more patient-centric.

So how did I end up in a clinical trial? A little over a month ago, I received the opportunity to be a clinical trial patient when I was enrolled into a COVID-19 trial in Stockholm, Sweden. From both a personal and clinical perspective, I was treated well and taken good care of. Yet there were some coincidental occurrences which I will explain in the following paragraphs that highlight a need for greater patient-centricity within the clinical study process.

To begin with, I became very ill last month with flu symptoms. After hearing about the opportunity to participate in a COVID-19 related clinical trial, I was told to go to the hospital and announce my presence at a specific reception. When I got there, I was told by staff that they had not heard about the trial. Understandably I was asked to leave because I had COVID-19 symptoms. The staff directed me to go to another building which I was unable to find, leaving me confused. I managed to call the person in charge of the trial. They answered but were busy, so they sent a text to another person inside of the hospital who thereafter called me back and managed to sneak me in through some sort of backdoor…

"The student doctor did not know and simply said: 'Google it.' This left me shocked."

Once I entered the patient room, I was told by the student doctor that I needed to sign the informed consent document as he handed me a pen to sign. It consisted of two papers, with the signatory page on top and the trial information page behind it. It was very hard to get a clear sense of what the study was about despite the information provided on the second page. Apart from that they will draw blood from me and take several uncomfortable nasal tests, it felt more “optional” for the patient to know more about the trial. Since there would be 9 tests in total, I asked what the tests were for and only then did I receive more information that I was unable to have seen before in the previously provided informed consent form.

The tests went smoothly and the student doctor ensured I was comfortable. After all of the tests were complete, my girlfriend was instructed to send my phone number to another person who would deliver the results of the tests. Before leaving, I asked what the study hoped to show and when they expected results. The student doctor did not know and simply said: “Google it.” This left me shocked.

After returning home, I received a phone call from the student doctor. He had forgotten to take my personal identification number and to ask me some important questions regarding my well-being that they needed for the trial. I asked myself, could they not have done that while I was at the hospital? The whole process was confusing, unclear, and lacking a sufficient onboarding. It left me wondering what other clinical trials are like as a patient. Granted it is a stressful time in the midst of a pandemic, yet the potential for improvement was clear.

"The need for patient-centricity as the core to improvements within the clinical studies space is more urgent than ever."

Now recovered from my illness, which turned out to be something other than Covid-19, I am returning to my work at Pilloxa with new insights to further improve our offerings. The need for patient-centricity as the core to improvements within the clinical studies space is more urgent than ever. Throughout the process, it was clear that things could have been digitalized more. The papers I signed to provide consent, for example, could have been signed digitally. Obtaining my prior health records (including my personal identification number) and contact details should have also been synched digitally. More information in detail about the trial and my role as a patient should have been accessible online. And finally, better communication within the hospital regarding ongoing trials and where to direct patients would have made the process much more clear. Granted, the healthcare system is overwhelmed right now, but it is also an opportunity for the system to improve and utilize the efficiencies brought forward through technology. An improved healthcare system directly impacts all of us. I hope our work at Pilloxa can contribute to improving it.

I would love to hear more personal experiences from others participating in clinical trials, whether it was in the past or recently. Feel free to email me at per@pilloxa.com with your insights. In the meanwhile, I hope you are all staying healthy and spending time with those you love.

All the best,

Per from Pilloxa

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