Do we really understand what people search for when they look for a clinical trial? Are we making it hard for them to find one? I asked those questions in a LinkedIn post a little while ago, in preparation for the launch of our platform, trialport.
Having been involved in clinical research for over two decades, I’ve seen a significant and sadly growing gap between people’s desire to take part in clinical trials and their ability to find suitable opportunities. This is backed up by the PPI work we have been conducting for our platform. I bet many of you instantly thought patients are not interested. It’s actually quite the opposite.
What Patients Actually Search For: Our research shows that patients typically search for clinical trials using a combination of three key information categories:
- Condition (72% of patients rate this as most important)
- Location (61.0%)
- Trial dates/timing (54%)
- Additional important search criteria include age/gender eligibility (46%) and health measurements (what the study measures) (41%)
An interesting discussion with colleagues recently revealed that from their perspective knowing if the intervention was a disease-suppressing or disease-modifying therapy and whether the study involved a placebo would be important to them. Interestingly, when I looked back at our data, this ranked low on the list of items patients wanted to know up front. That’s not to say it’s not important… It certainly is. It may just be a case of patients don’t know what they don’t know.
The Knowledge Gap: Despite these clear preferences, patient knowledge about clinical trials remains poor. This knowledge deficit directly impacts trial participation: a previous study showed for every 10% increase in knowledge score, the odds of a patient being willing to join a clinical trial increased by a factor of 1.27. Interestingly, patients searching for clinical trial information tend to use longer, more specific queries (averaging more than 3 words) compared to general internet searches. This suggests they have specific information needs but may lack the vocabulary or understanding to effectively find what they’re looking for.
How Can We Better Support People Looking for a Trial? Closing this knowledge gap starts with giving people the information they actually search for, in language they can understand, before they contact a study team. That is the problem trialport was built to address.
I know it’s stating the obvious. If we treat people as partners in the research process and give them the information they actually want in language they can understand, more of them will find a relevant study, understand it earlier, and arrive at the study team ready to have a real conversation. That is what shortens the road to life-changing therapies.
Presenting Opportunities of Hope Hidden in Plain Sight
At what moment did you begin to consider a clinical trial? Was it when you were first diagnosed? Did you decide later to explore options trying to find something better than your current treatment plan? Your interest in clinical trial participation came from a place of hope. You desired to find the best possible care, or maybe you just wanted to contribute to the big picture of future treatments and future patients.
Whatever your initial attraction, you believed you were embarking on an empowering journey to better healthcare for yourself and for the people who will be traveling this same road in the future. In reality, though, for many people like you, the process of actually finding a suitable clinical trial feels less like a clear pathway and more like a confusing, frustrating treasure hunt.
Why is Finding a Trial So Hard?
- Scattered Information: The landscape is fragmented. Trials are listed on global databases (like ClinicalTrials.gov), EU registries, national portals (like the UK’s Be Part of Research), sponsor websites, hospital sites, and charity pages. Where do you even start?
- The Language Barrier: The pervasive use of complex medical and scientific jargon in trial descriptions, inclusion/exclusion criteria, and study objectives immediately creates a barrier to understanding for non-experts. Many trial sites assume you speak the language of researchers. Are you supposed to come with a medical glossary in hand? You want answers, not jargon, and you shouldn’t have to guess whether a trial is right for you.
- Navigating Clunky Platforms: Many clinical trial search databases seem designed for researchers, not patients, with unintuitive filters, complex layouts, and unclear search logic. Trial databases are built to meet regulatory needs, not patient needs. They’re structured for data input, not human access. This leads to content that’s technically accurate but practically useless if you don’t have a clinical background.
- The Eligibility Maze: You then have to decipher long, technical inclusion/exclusion criteria to work out whether a study might even be relevant to you before investing your time and energy. This puts pressure on you and your family to interpret complex eligibility factors when your focus should be on care. Eligibility on paper is only the first question. Whether the study fits your life is the other.
- Location, Location, Location?: Now comes the challenge of finding trials running nearby, especially outside major cities. Some sites do have geographic filters, but they are often imprecise or hard to use effectively.
- Is it Still Recruiting?: You have made it all the way through these painstakingly long steps and believe you have found a trial that looks right for you. Then, when you try to enroll, you discover that the listing is months out of date and no longer accepting participants. Wouldn’t a simple graphic be helpful? A graphic that shows whether a trial is in early recruitment, actively enrolling, or near closing is more helpful than a “last updated” date hidden at the bottom of the page.
- Finding the Front Door: Now what? You have the task of identifying the correct, responsive contact person at a trial site to ask questions or express interest. Search results should offer you contact details for a real person. Chatbots and email forms are fine as add-ons, but they’re no substitute for a human connection.
The Human Cost of a Difficult Clinical Trial Search
This confusing process adds a significant burden during an already challenging time for you and your family. A difficult search means you may miss a trial that could really benefit you. If you’re not tech-savvy, or you don’t have access to support networks or strong advocacy, you may decide not to take part, which adversely affects the fairness of the outcome of the trial itself. When trials have low participation rates, it slows down research progress for everyone involved.
Building Bridges, Not Barriers: Towards Patient Trial Access Solutions
- Plain Language as the Default: Even small improvements (short summaries, glossaries, FAQs) make a big difference. When you understand what’s being asked of you, you can give real consent. When you feel respected in the process, you’re more likely to stay involved. This clarity also benefits trial teams, who spend less time explaining and re-explaining the basics and more time supporting participation.
- Smarter, Simpler Search Tools: A good clinical trial search tool should filter based on your priorities. This includes:
- Intuitive filters (by condition, location with map integration, age, and easily understood phases).
- Clear, standardized, and accurate recruitment status indicators.
- Designers must realize that one size does not fit all and therefore there should be multiple options developed of this type for you to find the few trials that ultimately meet your specific needs.
If you need help with these details, that support should be available in real time, not buried three clicks deep in an external link. Right now, most platforms still focus on filtering by disease stage, biomarker, or treatment history. These are important, but they shouldn’t be the only factors. You need to know whether a trial fits your life, not just your diagnosis. That distinction is what trialport’s medifit™ + readifit™ self-reflection tools are built around: medifit asks “Is this trial right for my health?” and readifit asks “Is this trial right for my life?”
- “Am I Likely Eligible?” Tools: User-friendly questionnaires in plain language would help you see whether a study may be relevant to you before formal contact, with the study team confirming eligibility when you get in touch.
- Clear and Supported Contact Pathways: Trial listings need to have prominent, accurate contact details and perhaps brief guidance for you on what information you need to provide when reaching out.
- Empowering Healthcare Professionals: Better tools and training for GPs and specialists helps them easily identify potential trials for you during consultations. Trial information should be available not only online, but through GP clinics, community groups, pharmacies, and hospitals. Printed guides, multilingual materials, and support lines all help widen patient trial access. Healthcare providers should be trained to help you explore trial options and to answer your questions about participation, timing, and risk.
- Strengthen Collaboration: Partnerships between platform providers, sponsors, researchers, charities, and patient advocacy groups streamline information and provide you with patient support. The most important voice is yours. If trial systems aren’t working for you, they’re not working at all.
Looking Ahead: Technology and Teamwork
Trial designers are seeing great potential in AI-powered matching tools. They must make sure these tools provide you with transparency, meet ethical considerations, and remain user-friendly while not replacing real human support.
Trial teams should invite feedback and act on it. They should add a “was this helpful?” button and listen to the answers. If you and other patients keep saying a section is confusing, they should rewrite it. If you don’t know who to call, they need to fix that. The best tools don’t just launch. They evolve. Researchers and trial designers must create a culture of feedback where you can easily report issues with listings or search tools to drive ongoing improvements. If you want to see how trialport has approached this, see how the pathway works.
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, on the view that finding a study is only the first step. A plain-language summary and the medifit™ + readifit™ self-reflection tools help people judge whether a trial fits their health and their life before they ever contact a site. Understanding comes first. Decisions follow.