Patients Report Lack of Awareness, Inconvenience as Barriers to Clinical Trial Participation

  • September 12, 2018
  • Dan Stempel
  • 4 Minute read

barriers to clinical trial participation

By incorporating patient feedback and implementing efficient digital marketing strategies, CROs and sponsors can boost clinical trial enrollment.

With the cost of clinical trials steadily rising — one estimate suggests that bringing a drug to market now requires over $2.6 billion — it’s more difficult than ever to see a study through to its conclusion. One of the most daunting challenges CROs and sponsors currently face is recruiting enough patients to complete their trial. Plus, even once patients have volunteered for a study, they may elect to drop out later in the process, delaying results and compromising the data’s validity.

A recent study published by BMC Health Services Research sought to uncover some of the reasons patients choose not to participate in, or drop out of, clinical trials. The survey was conducted with 1,621 members of the PatientsLikeMe network who were living with nine different primary conditions: MS (21%), Parkinson’s (20%), fibromyalgia (15%), ALS (10%), type 2 diabetes (10%), rheumatoid arthritis (8%), epilepsy (8%), major depressive disorder (5%), and systemic lupus erythematosus (3%).

The study also discovered ways to increase patient participation, including trial organization, convenience, and visibility. By incorporating feedback from patients on trial design, CROs and sponsors can give studies a more patient-centric focus. When compounded with increased awareness through digital marketing, these factors have the potential to boost enrollment and improve retention, which in turn can help lower costs and speed up the research process.

Barriers to Participation

Only 31% of patients surveyed had been encouraged to participate in a clinical trial by their physician. Most patients (61%) had never discussed a trial with their healthcare provider. Of the more than 1600 patients with chronic conditions, just 21% had ever enrolled in a study. While some groups reported higher participation (ALS and Parkinson’s were both 36%), in general the results showed significant room for improvement.

Some of the common reasons for not participating in a trial were inconvenience of travel (42%), concerns about side effects (30%), chance of getting a placebo (23%), and having no interest in a particular trial (23%). As for “very” or “somewhat” important factors to consider before beginning a study, participants cited the opportunity to improve health of others (98%) or self (98%), reputation of the institution (97%), and covering medical bills in case of trial-related injury (96%).

Most patients who did enroll in a trial (58%) were “extremely” or “very satisfied” with their experience. However, 20% remained just “slightly” or “not at all” satisfied with their trial. In particular, patients with lupus, epilepsy, rheumatoid arthritis, and fibromyalgia reported negative Net Promoter Scores (NPS), indicating that they would discourage other patients from participating in a clinical trial.

Opportunities for Improvement

In general, the foremost obstacle to increasing patient participation seems to be a lack of awareness. Most patients (61%) reported that they had never been invited to enroll in a trial by their physician. Despite this fact, 88% of those surveyed said they would be interested in learning more about clinical trial participation, with 80% stating that they would like to enroll in a trial within the next 12 months.

These impressive stats present a promising opportunity for clinical trial recruitment. However, patients’ experiences once they’ve enrolled in a trial are equally important. 93% of patients surveyed reported that they would be interested in improving trial design to make it more convenient and focused on their needs.

Patient-centric approaches are likely to improve patient satisfaction as well as help build more efficient research procedures. In fact, a study of cancer trials in the UK showed that trials that incorporated patient input were twice as likely to hit their recruitment goals.

Raising Awareness Through Digital Marketing

While patients with rarer conditions like ALS (36%), Parkinson’s (36%), or MS (20%) were more experienced with clinical trials, patients with more common conditions like type 2 diabetes (13%), fibromyalgia (11%), and major depressive disorder (11%) were less familiar with them. This discrepancy may be due to the severe symptoms of the rare conditions or their robust support communities, but there remains an opportunity to further engage patients with more common chronic ailments.

Studies show that over 70% of US adults with at least one chronic condition have looked for health-related information online. Nearly half have also posted or shared a post about their chronic condition. The active online presence and support communities that have developed around those with chronic conditions offer a large pool of candidates who may benefit from and be interested in trial participation.

CROs and sponsors have the opportunity to reach out to people already searching for health information by developing an effective SEO strategy and utilizing PPC tools like Google Ads. While only 11% of clinical trials currently use social media to recruit patients, Facebook ads can target patients who have joined groups or liked pages related to a particular condition, thus increasing the chance of an ad being seen by an interested user. These digital marketing strategies can also help clinical trials reach a diverse group of people within specific geographic regions who might not otherwise be aware of relevant study opportunities.

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