StuffThatWorks: Harnessing crowdsourced patient data to bridge the gap in clinical trial participation

A new survey conducted by the StuffThatWorks platform has collected patient-generated, crowd-sourced Real World Data for clinical research – revealing significant barriers to clinical trial recruitment.

StuffThatWorks is a crowd-sourced patient-centric real-world data for the medical and research community, having 3 million members across 1,250 conditions.

The platform provides detailed patient information, providing an environment for patients to share their experiences, aiming to improve clinical trial recruitment and treatment insights.

The results of StuffThatWorks new survey – Barriers in Clinical Trials – shows that patients who have exhausted treatment options are eager to participate in clinical research, but that huge barriers remain to recruitment.

The survey received responses from over 6,000 patients with chronic conditions such as COPD, fibromyalgia, peripheral neuropathy, osteoarthritis, multiple sclerosis, and more – aiming to bridge the gap between the huge demand for clinical trial participants and the lack of success in recruiting them.

The results revealed striking findings, including that 93 per cent of patients are interested in learning about trials that are relevant to their condition, 47 per cent have exhausted their treatment options, and yet only 30 per cent have heard about clinical trials from doctors.

Furthermore, despite 98 per cent perceiving clinical trials as beneficial, only 7 per cent of patients with severe conditions are aware of them, and 67 per cent of participants considered their condition severe, indicating a high level of unmet need.

Health Tech World speaks to founder and CEO of StuffThatWorks, Yael Elish, to find out more about how crowdsourced patient experience data can transform clinical research.

“What’s important about this survey is the participation of people within the StuffThatWorks community,” says Elish. “The survey itself is valuable, but the underlying aspect – how patients contribute and engage – is even more interesting.

“Patients participate with a shared vision: to turn the information they provide into real data that can advance research and help others with the same condition. Because of this, we see a significant response rate and high levels of participation.

“More importantly, beyond the survey itself, we have access to a wealth of background data on these patients, which allows for far deeper insights than just the specific survey answers.

“We were particularly curious about the huge gap between two major issues. On one hand, there’s a critical challenge in the pharmaceutical industry – every day that a trial is delayed due to recruitment issues is incredibly costly. On the other hand, there are millions of patients suffering without access to new treatments.

“We wanted to understand why recruitment struggles persist, so we used our platform – typically used for gathering data on treatment effectiveness, symptoms, and side effects – to explore this issue in depth.

“What’s particularly concerning is that these trends were consistent across gender, age, severity of condition, and ethnicity.

“This suggests a major communication failure – patients who might benefit from clinical trials simply aren’t being informed about them. I believe the main issue is that clinical trial information remains too localised.

“Trials are still largely communicated at specific research sites, meaning that many potentially eligible patients are never reached. Despite the digital age, not much has changed in how trial information is disseminated.”

Elish says that one of the biggest challenges in reaching patients is the lack of effective digital outreach, noting that, unlike other industries, there is no targeted advertising for clinical trials – platforms often self-regulate and restrict such advertisements.

“If you need to find patients with a particular condition, there’s no dedicated online platform to connect with them easily,” says Elish. “This makes recruitment extremely costly and inefficient. Additionally, there’s often insufficient background data on patients, making screening more difficult.

“While Stuff That Works isn’t a recruitment company, one of the problems we do help solve is data depth. For every patient in our community, we have detailed information on their condition, history, and experiences – providing crucial insights for initial screening. Unfortunately, this kind of patient-centred data is still largely missing in the broader clinical trial landscape.

“Of course, there are other barriers along the way that complicate the process, but fundamentally, this is a complex and systemic issue that needs to be addressed.”

Elish says that after Covid-19, there was a push towards decentralised clinical trials and that new technologies and virtual recruitment strategies have emerged in order to bring trials closer to patients, making participation more accessible.

“Now, it seems like things have reverted to pre-pandemic methods,” says Elish. “From an outsider’s perspective it looks like recruitment has circled back to being hospital-centric.

“Most clinical trials now rely on local principal investigators at specific sites who are recruiting their own patients. This remains the primary fuel for clinical trial recruitment, but it also means that many eligible patients outside those networks are being overlooked.”

With so many patients reporting having exhausted all available treatment options, Elish says that the issue extends beyond clinical trial recruitment, and that patients need access to a broad range of treatment information, not just drug-based options.

“Beyond pharmaceuticals, there should be an organised dataset that shows what other patients have tried, what has worked, and what hasn’t,” says Elish.

“At the same time, drug developers need to improve patient education and involve them much earlier in the process. There is already a movement towards patient voice and patient-centred research, but it needs to be done more effectively.

“Patients should be in contact with a wider network of others much earlier in their journey. Platforms like ours can facilitate discussions, where real questions are asked, and information is shared in a more balanced and transparent way.

“The industry isn’t used to direct patient engagement – communication is either minimal or highly structured, often through surveys that don’t capture the full picture. Instead, doctors and researchers should engage patients in meaningful conversations about their work, explaining the research and its potential benefits in detail.

“Doing so would not only educate patients but also increase participation in clinical trials.

“Most doctors aren’t directly involved in clinical trials. The majority of patients see physicians who aren’t conducting research, so clinical trials never even come up in conversation.

“That’s where platforms like ours can play a bigger role in putting the right information in front of patients. But it’s a two-way relationship – the recruitment process is highly complex, and patients shouldn’t have to go through an exhausting screening process, only to be rejected from a trial.

“What’s needed is better targeting and earlier, more consistent communication. The screening and recruitment process should be designed with patients’ needs in mind, ensuring that those who are likely to qualify are reached at the right time and in the right way.”

Elish emphasises that the way the StuffThatWorks platform has been created is very different to the current ways that patient communities interact – typically through social media groups centred around discussion.

“We built a company with strong data foundations, ensuring consistency across all conditions,” says Elish.

“We collect the same structured information in the same way across all conditions, allowing for meaningful analysis. For example, through AI-driven insights, we can identify potential new uses for existing drugs based on real patient reports, sometimes revealing effectiveness for populations they weren’t originally intended for.

“At its core, big data, structured organisation, and consistency across conditions – while maintaining an ongoing relationship with patients – is, in my view, the key to solving something truly significant.

“By integrating medical records, geospatial data, and wearable technology, while ensuring that patients continue to provide valuable context, we are building the largest free data repository for chronic conditions.”

StuffThatWorks will now be analysing additional data from the survey to provide information regarding insights and barriers in specific patient populations, and the database of patient-reported outcomes is now available for custom research and real-time data analysis.