Data from the largest patient-reported real-world data exploration underlines new opportunities for medical research to accelerate drug development
Over 93 percent of more than 6,000 respondents are interested in learning about clinical trials relevant to their condition, but unexpected barriers delay participation
GAASH, Israel, Jan. 29, 2025 (GLOBE NEWSWIRE) -- StuffThatWorks, the largest, most up-to-date crowd-sourced patient-centric real-world data optimized for the medical and research community, today released the results of a new custom survey, Barriers in Clinical Trials, which shows that patients are primed to participate in clinical research1. The survey taps the reactions of over 6,000 patients with chronic conditions and reveals that an overwhelming majority of respondents consider clinical trials a path to accessing new medical treatments, with more than 93 percent interested in learning about trials that are relevant to their condition.
In addition, nearly 57 percent of respondents report that they are severely impacted by their medical condition, with nearly 43 percent believing they have exhausted all other treatment options, highlighting an urgent need for additional treatment pathways. The survey's findings also reinforce the need for more proactive engagement and education; nearly 96 percent of respondents reported they received little or no information from providers about clinical trials in the last six months.
"The survey data reveal a desire among patients to access clinical trials as viable treatment options, underscoring the need for medical professionals to actively consider clinical research for addressing their patients' needs,” said Yael Elish, Founder and CEO of StuffThatWorks and a WAZE founding team member. "This unique patient perspective and experience collected in structured form along with other organized health information provides valuable insights and underlines a new way for clinicians and researchers to engage with patients to better inform the development of study protocols to benefit patients and advance the science of medicine.”
The survey was conducted among patients with chronic conditions through StuffThatWorks, the world's first large scale patient-generated Real World Data platform. StuffThatWorks empowers patients to transform their experiences and health information into structured organized Real World Data optimized for patient centric Real World Data research. Research organizations receive near real time comprehensive access to organized aggregated, de-identified data and corresponding patients.
With over 3 million members across 1,250+ conditions and 1.3 billion data points in the U.S. and globally, StuffThatWorks is the largest and most up-to-date patient-generated crowd-sourced Real World Data optimized for generation of unique patient journey insights. From rare to common chronic conditions, patient insights covering various topics, including symptoms, treatments, and disease burden, can be generated in real-time and broken down by racial and ethnic demographics, geography, lifestyle, symptoms, and more. In addition to real-time access to the data set, on-demand custom surveys like this current Barriers to Clinical Trial initiative can be fielded to gain real-world insights from patients.
Patients on StuffThatWorks share anonymized health information at scale on an ongoing basis. Instead of exhausting patients by re-asking mundane questions, our approach allows us to benefit from the already collected patient data and to conduct follow-up surveys for the missing information only. In addition, customers benefit from built in powerful analysis and insight generation tools that cross all conditions.
"Until now, researching the experience of people living with chronic conditions in the real world meant interviewing individual patients or running one-off limited surveys, which are time-consuming, costly, and, more importantly, limited in their ability to represent the diversity of patient populations and to provide insight beyond the limited number of questions possible,” added Elish. "Patient crowdsourcing at scale can reveal unmatched insights on any patient-centric topic, in this case - the insights needed to address barriers to patient participation in clinical trials.”
The custom survey Barriers in Clinical Trials included 6,004 respondents with an average age of 61. Patients who participated in the survey suffered from a wide range of chronic conditions, including COPD, fibromyalgia, peripheral neuropathy, tinnitus, osteoarthritis, COVID-19, multiple sclerosis, migraine, high blood pressure, and clinical depression.
The study also revealed that:
- Most respondents (98 percent) perceive clinical trials as a path through which they can significantly benefit by being included in the development of new medical options
- Nearly one-third (29 percent) shared that their primary motivation for participating in clinical trials is to help advance science
- Almost one-quarter (23 percent) want to participate in clinical research because they have no other treatment options available
- For nearly one-quarter (23 percent), their physician recommended their participation in a trial, but the obstacles to involvement are travel costs and lost wages the patient would shoulder
- One fifth (19 percent) of respondents shared that having their medical treatment and/or receiving an honorarium would motivate them to participate in a study
- In addition, 41 percent shared being in a stressful or challenging financial situation, and more than 31 percent said their financials impact decision-making
- Only 13 percent had a doctor explain why a clinical trial could be helpful for their condition, and an overwhelming majority (nearly 96 percent) revealed they did not receive information from doctors about clinical trials in the last six months
- Participants indicated they are flexible regarding the possible format of clinical trials and would participate in in-person, virtual, or hybrid settings.
Additional data from the survey is being analyzed to provide information regarding insights and barriers in specific patient populations. This comprehensive database of patient-reported outcomes is now available for custom research and real-time data analysis. These custom surveys are a new offering and can be enriched with past and future data from the comprehensive StuffThatWorks database.
For more information regarding StuffThatWorks, please visit www.stuffthatworks.health.
About StuffThatWorks
Created by Waze founding team members, StuffThatWorks uses crowdsourcing and AI to transform shared patient experiences and data into the first organized large scale, multidimensional, longitudinal, real-world data set facilitating a neutral representation of diverse populations and treatments, insights generation and direct engagement with patients throughout their journey.
StuffThatWorks is the home to 3M members across 1,250 condition communities that have so far shared 1.3B data points. Already the largest organized Patient Level Real World Data platform, StuffThatWorks is differentiated by its powerful data collection, structuring and organization infrastructure. The unique, proprietary data set and unique AI and powerful Chat GPT like capabilities enable the efficient generation of insights for research, market access and drug development.
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