Health Technologies

Landmark poll of chronic condition patients shows widespread eagerness to embrace clinical trials

The vast majority of patients with chronic conditions would embrace clinical trials as a way of accessing new treatments, but unexpected delays continue to thwart their participation, new data shows.

The largest, up-to-date study of its kind, involving more than 6,000 patients with chronic conditions, shows that 93 per cent are interested in learning about trials that are relevant to their condition.

In addition, nearly 57 per cent of respondents report that they are severely impacted by their medical condition, with nearly 43 per cent believing they have exhausted all other treatment options, highlighting an urgent need for additional treatment pathways.

The data comes the Barriers in Clinical Trials study published by StuffThatWorks, the world’s largest patient-focused real-world data platform, which generates crowd-sourced patient data for the medical and research communities.

The initiative has three million members across 1,250 condition communities that, to date, have shared 1.3B data points.

The latest data reinforces the need for more proactive engagement and education, with nearly 96 per cent of respondents saying they have received little or no information from providers about clinical trials in the last six months.

Yael Elish, founder and CEO of StuffThatWorks, says: “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.”

Patients who participated in the survey had an average age of 61 and 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.

Other findings included:

  • Most respondents (98 per cent) 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 per cent) shared that their primary motivation for participating in clinical trials is to help advance science
  • Almost one-quarter (23 per  cent) 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 per cent) of respondents shared that having their medical treatment and/or receiving an honorarium would motivate them to participate in a study
  • In addition, 41 per cent shared being in a stressful or challenging financial situation, and more than 31 per cent 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 per cent) 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.

Patients on StuffThatWorks share anonymised health information at scale on an ongoing basis. The platform uses crowdsourcing and AI to enable patient insights covering various topics, including symptoms, treatments, and disease burden. It can be generated in real-time and broken down by racial and ethnic demographics, geography, lifestyle, symptoms, and more.

The platform is described as “the first organised 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”.

Eilish adds: “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.”

“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.”

Chantal Beaudry, senior partner, health communications and patient recruitment at FINN Partners, which is working with StuffThatWorks to share its data insights to encourage greater participation in clinical trials, says: “The survey’s data show that patients are not simply willing; they are eager to participate in clinical trials, provided they are informed and supported throughout the process.”

StuffThatWorks was created by founding members of Waze, the satnav software pioneer now owned by Google.

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