The patient perspective on clinical trials: what needs to change?

Patient perspective on clinical trials

In order to better understand clinical trials from a patient’s perspective and find out what they would ideally like to change throughout the trial process, a survey was launched earlier this year entitled “The Patient Perspective on Clinical Trials – What’s Going Well, What Needs to Change?”. In this article, we take a look at what the main findings of the survey were, as patients highlighted specific barriers to trial participation. 

The survey evaluated the responses of patients both with and without trial experience; among the 124 respondents who completed the survey, around 30% had previously been involved in a clinical trial, while the remaining 70% did not have any trial experience, but would consider joining one in the future. 

Catherine Higginson, marketing and communications lead at Climedo, who launched the survey alongside Trials24, said: “In the past, we’ve conducted several surveys with trial sponsors, sites and CROs about their needs and opinions in terms of clinical trials but we realized that we rarely take the time to speak to patients directly. Given that patient centricity is a core focus in everything we do at Climedo, and is being increasingly recognized as a success factor by trial sponsors, we decided to try to make their voices better heard.”

Overall, the patient perspective on clinical trials was that there were some specific barriers to trial participation that could be improved upon. 

Embracing digital technologies 

Although digital technologies are currently revolutionizing healthcare, almost half of the patients with trial experience who participated in the survey said they had not used any such technologies so far in the clinical trial process. But, using digital tools is something that patients across all age groups were very open to. 

“What stood out most to us was that patients were overall very open to using digital technologies and channels to transmit trial-related information, even though 44% of patients with trial experience had not used any technology in a trial so far. This presents significant untapped potential for trial sponsors, sites and CROs to make the patient journey as smooth as possible and reach patients ‘where they are’,” said Higginson. 

In fact, almost two-thirds (64%) of patients said that digital technologies, such as televisits or wearables, would make their trial participation much easier in the future, as it would allow them to share medical information from the comfort of their own home. 

Additionally, most patients (more than 50%) said they would also like to make use of ePRO (electronic patient-reported outcomes), a patient cockpit, and EHR (electronic health record). 

However, it’s also worth noting that, despite patients’ overall openness towards digital elements, when it comes to trial recruitment, the majority of respondents said they would be most easily reached via offline channels, such as at the doctor’s or a trial site (Ø 73%), or through patient groups (Ø 57%).

Flexible participation: shorter journeys and limited on-site visits

As mentioned, digital tools can allow patients to share medical information from their own home, meaning unnecessary journeys can be avoided. This is important because long journeys and unnecessary on-site visits were also listed as areas that patients felt could be improved upon. 

When asked what would make them more likely to take part in a clinical trial in the future, half of the patients listed ‘shorter travel time, less time expenditure’ in second place, after the use of more digital elements. 

However, the survey found that patients had a higher tolerance for undertaking longer journeys if on-site visits were less frequent. If they were expected to travel on-site every two months for two years, 36% of patients with trial experience said they would be willing to travel between 30 minutes and one hour, while just over half (53%) of patients who had not experienced on-site visits said they would be willing to travel for up to one hour. 

In contrast, if patients were expected to make on-site visits every two weeks for two years, half the patients with trial experience would only be willing to travel for 30 minutes at most. 

Patients without trial experience were slightly more tolerant, though, and 51% said they would be willing to travel for up to one hour for a bi-weekly visit. But, this suggests that perhaps patients without previous trial experience underestimate the impact of frequent travel on their stress and effort levels, whereas people who have participated in clinical trials before have already had first-hand experience of how stressful the frequent travel can be.

A need for clearer communication

Another key theme throughout the survey was that patients believed there was a need for more communication and clearer information. 

“Patients want to understand the trial’s background, processes, potential risks and what will happen afterwards. Several people underlined that they received no information about the trial results whatsoever, despite having asked for it, and despite sponsors being obliged to publish a lay summary of the results,” commented Higginson.  

And, it seems it goes both ways, as patients also said they would be willing to report more information to personnel during the trial.

“Another thing we found surprising was that many patients were willing to convey more information during the trial – we had previously assumed that they would want to have to report as little as possible, for their own convenience. But it seems that this need for information sharing goes both ways, and the more transparency, the better. We just need to give them the right platform for reporting and receiving such information,” said Higginson.

Additionally, 50% of patients with clinical trial experience also commented that ‘more sensitivity, empathy or appreciation by staff’ would make them more likely to take part in a clinical trial again in the future. 

Positive feedback: patients with trial experience would take part again 

Despite patients believing that certain aspects of clinical trials do require change, the majority (83%) with trial experience said they would be willing to take part again, with the main reasons being: they feel as though they are contributing to valuable research, they are helping others with the same condition, and the fact that trials are the only relief they have. 

“This may encourage patients without previous trial experience to understand some of the benefits of trials, having previously seen the challenges and burdens involved. So, we hope this helped to create more transparency, both for trial sponsors and patients,” said Higginson. 

In the closing comments, patients also highlighted the importance of attention towards rare diseases, mental health in trials, and vulnerable communities.

To discover more challenges associated with clinical trials, we invite you to read this article: “How to overcome clinical trial challenges.

Explore other topics: Clinical trialdigital technology

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