Eight in ten people we surveyed said they would take part in a clinical trial. Fewer than a third ever had. That gap between willingness and action is where this article starts: first with what 157 people across the UK, USA, Canada, and Europe told us about trials, then with what long-term participants say helped them stay the course.
The survey was run as patient and public involvement (PPI) work across patient communities in the UK, USA, Canada, and Europe. Its goal was to understand how people perceive clinical trials, what they have experienced, where the pain points are, and whether a plain-language platform like trialport would meet a real need. It covered respondent demographics, perceptions of clinical trials, participation, and access to information: who the respondents are, how they view importance, safety, and trust, how willingness compares with actual participation, and how much clear and accessible information matters to them. It has had 157 respondents to date.
- Respondent Demographics
58.3% of survey participants were female, 58.4% were between the ages of 45 and 64, and 72.2% reported having health issues.
- Perceptions of Clinical Trials
High importance and safety: clinical trials are viewed as both important (8.14/10) and safe (7.83/10) for advancing medical research. Breaking misconceptions: 61% of respondents believe clinical trials are just for serious illnesses. Strong trust: participants express high trust (7.53/10) in clinical trial information provided by researchers.
- Participation in Clinical Trials
80.6% of respondents express a willingness to participate in clinical trials, but there is a significant gap between intention and action. Only 30.6% of respondents have actually participated in clinical trials. This gap is possibly due to lack of awareness, eligibility criteria, or concerns about risks and side effects.
- Barriers to Participation
Travel distance and qualification requirements emerged as the top barriers, with 51% of participants citing each of these challenges. 43% of respondents struggled to find trials that matched their conditions or requirements. Equal proportions (32%) reported insufficient trial information or worries about potential side effects.
- Finding Studies: Primary Routes to Access Trials
84% use search engines, 51% use databases like ClinicalTrials.gov, and 41% use platforms like Facebook or TikTok.
- Information Accessibility
There is a strong preference (91.7%) for a user-friendly platform that provides clear and accessible information about clinical trials. Most respondents (83.3%) believe that such a platform would make them more likely to join a clinical trial, which suggests that better access to information may motivate participation.
The survey also asked participants about desired features for a clinical trial platform, and the results are:
- A section describing risks and benefits of each trial: 81%
- Information helping me to work out if I am suitable: 73%
- The ability to search by condition, location, treatment type: 73%
- Easy-to-understand summaries of trials: 68%
- A section explaining the support I will receive: 68%
- A name and contact details for a center running the trial: 65%
- Information helping me work out if I would be able to cope with the trial: 54%
We have listed a few key conclusions gathered from the survey results:
- There is a generally positive perception of clinical trials, but significant barriers prevent willing participants from taking part.
- Targeted information campaigns and outreach efforts are needed to raise awareness, dispel misconceptions, and facilitate access to clinical trials.
- A user-friendly platform could play a crucial role in providing accessible information, addressing concerns, and helping people work out whether a study fits their health and their life before they contact a study team.
- To increase participation, it is essential to address concerns about potential risks and side effects, as well as build trust in the clinical trial process.
Patient Insights from Medical Trial Experiences
Clinical trial participation is a unique journey. For some, it is a way to access new treatments. For others, it is an opportunity to contribute to important medical advances. Long-term participants hold a wealth of knowledge that can help people considering a study. Their stories shed light on the practical and emotional sides of navigating medical trials and help others feel more prepared.
Experienced participants emphasize that understanding the trial protocol upfront reduces anxiety. People who know the purpose, expectations, and potential risks can make informed decisions and build trust with the research team. This clarity is a turning point for many in their decision to continue with long-term studies. It is also the difference between being eligible and being ready.
Participants also share that seeing the value of their contributions keeps them motivated. Whether their involvement advances scientific understanding or opens the door to treatment options, knowing they’re part of something meaningful adds purpose to their journey.
Patient insights point to four things that helped people keep going and manage trial participation: preparation, organization, a personal health diary, and a solid support system. Preparation gives clarity before a trial begins. Organization helps with keeping track of appointments and medications. A personal health diary benefits both participants and trial coordinators because it shows how treatments are working. Lastly, family and friends provide a support system that helps with emotional and logistical challenges.
Emotional Resilience in Long-Term Trials
The emotional challenges of a long-term trial are under-discussed, and a support network is essential. Having people to talk to, whether family, friends, or an online patient community, makes a significant difference. One participant described how connecting with others in the same trial made her feel like part of a community and lessened her feelings of isolation.
Participants share that they practice giving themselves grace on tough days. Clinical trials often bring physical and emotional ups and downs. Some days feel hard, but people stay motivated by remembering the bigger picture: personal health benefits, or contributing to medical breakthroughs.
Mindfulness, stress management, and creativity also play an important role. Some find that meditation or journaling helps process feelings, manage anxiety, and gives a sense of control. Others focus on hobbies, spend time in nature, or take up creative activities to recharge and maintain emotional balance. One participant said painting became their outlet and helped them navigate challenges with renewed focus.
Building Trust with Research Teams
Experienced participants often say good relationships with their trial coordinators gave them a positive experience. Open communication helps people feel heard and valued. Many participants advise newcomers to establish a good rapport with the research team from the beginning. Questions, honest feedback, and staying in touch are all part of mutual trust.
Participants report that regular check-ins with coordinators helped them feel supported. These touchpoints allowed them to raise concerns about side effects or logistical issues. One participant recalled how a simple adjustment to their appointment schedule, arranged after a conversation with their coordinator, made their experience significantly smoother.
Long-term participants noted that trials that incorporate patient feedback often create a better experience for everyone. Open dialogue can improve trial processes and build lasting trust between research teams and their participants. Feeling like a valued contributor rather than a passive subject is a recurring theme in medical trial experiences.
Lessons from Long-Term Participants
Adaptability is the one takeaway that resonates across the board. Trials involve unexpected changes in protocols, schedules, or personal health outcomes. Long-term participants encourage others to approach these challenges with flexibility and patience.
Celebrating small victories is another valuable lesson. Some participants acknowledged progress in their condition or celebrated reaching the end of a treatment cycle. These milestones were motivation to continue and reinforced the value of their participation.
Many participants also highlight the importance of staying informed. Keeping up with trial updates, scientific publications, or broader developments in the medical field enhances each patient’s understanding and sense of involvement.
A clinical trial is a journey that blends personal growth with collective progress. Long-term participants offer advice and encouragement for others considering or currently navigating these medical trial experiences. Their insights remind us of the resilience and adaptability it takes to make a lasting contribution.
If you are weighing a study, see what participation could involve. The medifit™ + readifit™ self-reflection tools help you ask two questions before you contact a study team: Is this trial right for my health? Is this trial right for my life? Try them here.
About the author
Keith Berelowitz has spent more than twenty years watching clinical trials work on paper and struggle in real life. He has helped run studies, advises sponsors and CROs on how they engage with people, and chairs a UK research ethics committee, where consent forms and participant information sheets cross his desk every month. That vantage point led to one conclusion: most trial problems are not failures of science. They are failures of understanding at the moment a person decides.
He founded trialport, a clinical trial navigation and decision-support platform, to help people weigh a trial in the context of real life rather than on paper alone. Its medifit™ + readifit™ self-reflection tools ask two questions: Is this trial right for my health? Is this trial right for my life? Understanding comes first. Decisions follow.