The Patient's Clinical Trial Journey

Trial Better: A Clinical Trials Podcast

Tell us about TrialScope and your experience.

I am the Vice President of Patient Engagement at TrialScope. I used to work at the Michael J. Fox Foundation for Parkinson’s Research and also had my own company, Clinical Trial Connect, before it was acquired by TrialScope last year. I’ve been working in the clinical trial recruitment world for the past ten years. I am overseeing a new product called TrialScope Connect, which sets sponsors up for success when it comes to clinical trial improvements.

What typically motivates patients in a clinical trial?

Every patient is different and every trial is different. People are dealing with diseases that are often very urgent or difficult. Having a path towards a better prognosis, extending your life, and improving your quality of life are all factors that people consider when it comes to clinical trials. There are people who participate in clinical trials who know it might not improve their quality of life, but it’s something they want to do for the next generation. For other people, there is an awareness in recognizing no cure has ever come on the drug shelves without going through the clinical trial process, and they want to do their part to make sure science continues to move forward.

Tell us about the journey of a patient in a clinical trial.

The journey starts when a patient is first diagnosed with a condition, but following that, there are many different places where someone might become aware of a clinical trial for the first time. At that point, patients need an educational component to become familiar with the different terminology. Once a patient has that knowledge, they can decide if they are interested in moving forward and participating in research. Then, they have to find the right trial for them. Every trial is different and has different inclusion and exclusion criteria. Every trial is run at different site locations. There is a challenge around finding the right opportunities. Once a patient does identify an opportunity, getting in touch with that site is the next step. Then they go through the enrollment process. Ultimately, a patient will learn if they are eligible to participate in that trial. If not, they’ll have to restart their search process.

Do you see patients becoming more engaged in clinical trials and in general has this impacted clinical research?

Today, people are used to being very informed. Patients are surprised when they start the journey at how analog it is and how many roadblocks exist. One of the things that is problematic is that a lot of patients don’t know how to search for a trial that is the right fit for them. There is no easy tool to solve this problem, and patients have to tediously review clinical trial listings. In addition, if patients aren’t aware of how to search proactively, they’ll never know their full range of options. This denies them an informed choice. This is how standard trial-centric matching works, where the finish line is one trial and a lot of times a funnel is used to see how many patients need to be at the top of the funnel to get to the trial’s required number of patients. What’s unfortunate is that for all of the patients that weren’t eligible there’s not a great next step of action for them. For the enrolled, they might have missed out on the opportunity to be in another trial since they were only being screened for this specific one. We think about patient centric trial matching, putting the patient in the middle and asking what trials does this patient actually match to and allow them to make an informed decision.

What can the industry do to get to this patient-centric model?

There’s a lot of companies that are tackling this and whether the solution is a website or an integration, people are trying to do right by patients. It’s an opportunity to standardize how we talk about eligibility criteria and the benefit is that companies don’t have to reinvent the wheel. With TrialScope, they can now have a best-in-class platform to match a patient to all the trials that are a good fit for them.

What can sponsors do to motivate and educate the recruiters of their trials? How do we get them to be more knowledgeable about the trials that are out there?

The physicians are challenging. They have 15 minutes or less with a patient. Anything that is disruptive to their flow or takes up more time is something they aren’t going to use. However, there is a solution where they can help the patient to make a decision that is within the time of their appointment. Patients can review their matches in advance, get material in the waiting room, and by the time they’re with their doctor they have a decision and are fully informed. Now, the doctor can talk to them about that specific trial. A lot of solutions like that are possible.

How do sponsors ensure that they are being mindful throughout the patient’s journey during all of the phases?

Something that happens is that patients spend a lot of time reviewing their matches and they never hear back from the site. Sponsors can be more communicative with patients, even in an automated way, to let them know when a site has stopped recruiting. Let’s make sure no patient goes down a dead end and is waiting for a response that they’ll never get.

For the people that do enroll, the journey continues for them. A lot of times patients don’t know what happened with the trial. Making plain language summaries available in different languages and sharing patient data with those who participated in the trial can be steps towards increasing patient satisfaction with their trial experiences.