Patients and Clinical Trials: TRUST is what we need the most

The past few months were a challenge for everyone. Yet, the fear that patients felt due to the COVID-19 treat is indescribable. The high-risk patients were faced with multiple dilemmas like: Should I go and see my doctor for a regular check-up? How am I supposed to get my medicines prescribed? My parents are both with diabetes and so I remember the times when they had even the smallest health issue, I would pray it will go away so that they don’t need to go to the hospital now.

There is one more dilemma that we don’t discuss, yet our team at FindMeCure knew it’s important not just to the patient, but to the entire society and this was:

Should I participate in a clinical trial?

For most of you who have been following me with my previous articles, you know that FindMeCure has developed a platform that simplifies the journey for a patient who wants to volunteer for a clinical trial online. The first doubt we had when the lockdowns started country by country was: Will there be any patients still interested in clinical trials? And so we started observing, waiting for the patients to come (or not come). As time went by, we saw that patients were not just proactively searching for information about clinical trials, they were interested in taking part in them. You can learn more about our observations and insights in a report, which you can download here.

Even though we were isolated, I met virtually with so many interesting people, mainly from the clinical research industry. They were open, transparent and they wanted to share, as I did. And so the topic about patients going back to clinical trials was one of the main concerns we all had. Until I met Diane Ricca, a Patient Recruitment Supervisor from Suncoast Clinical Research, who was this smiling person telling me: “Don’t worry, things are actually going well. I am speaking with patients and they are happy to go to the lab, happy to come to our site and happy to be prescreened hoping they can be a part of a clinical trial.” You can listen to a part of our conversation here:

And so I started wondering. How come the entire industry is afraid of how to bring clinical trials back on track and whether patients will be willing to go back and participate. Then people on the frontline like Diane are so confident about it? And then it struck me: It was the relationship. It was the TRUST we build when we as people meet and get to know each other.

Unlike Diane, most of the clinical research professionals work in silos, away from the patients, not speaking to them. This leads to inaccurate assumptions and insecure relationships. There is no real communication besides a few focus groups run at the beginning of the protocol development. During the clinical trial, we rely on the sites to play this role and be our getaway to what happens with patients. But Diane and all the people out there who work at sites and have a genuine desire to help others are not everywhere. Not because they don’t want to be. Investigators don’t have the time, the accountability and the opportunity to focus on the patients – their wants, needs, and their feelings. Unfortunately, not every site has a polite coordinator to work only with the patients (as it should be).

TRUST is what we need the most. I am glad to see all these new approaches and technologies used in the clinical research space. Data management, collection, improvement, AI, blockchain, etc, all these newbies will empower us, I am strongly convinced. Yet, they can empower us only if we use them to save time, to make ourselves more efficient in order to build better TRUST between the clinical research staff and the patients, if there is a true partnership.

Some priorities need to shift when planning a clinical trial in order to build a strong relationship with the patients. Focusing on site and investigator selection has never been more important and the choice of a patient coordinator can truly make or break this TRUST we’re speaking of. At the end of the day, we need to leverage technology when planning feasibility so that more time is spent on building a real relationship with the patients and understanding their journey.