Clinical Trials from the Patient Perspective: Survey in an Online Patient Community

Posted: Mar 06, 2017
BMC Health Services Research. 17. 166. DOI: 10.1186/s12913-017-2090-x.
KEYWORDS: Logistics/Transportation, Cost/Insurance, Remuneration, Non-Cancer


Patient-powered research networks may enable researchers to optimize trial design by evaluating patient's concerns. 

Why this item may be useful

In a survey of over 1600 patients with chronic illnesses, there was a high degree of willingness to take part in trials but a low degree of trial experience and variable rate of trial satisfaction among those who had ever taken part. The main barrier to taking part in trials was lack of awareness, with 61% not being invited to participate by their physicians. Females and non-white were under-represented among the patients who had participated in a trial. Reasons for declining participation included (in descending order), inconvenience of travel, concerns about side effects, chance of getting a placebo, and having no interest in the particular trial. Given that these research-related factors might be a deterrent to participation, the authors suggest possible improvements:

  • More patient-centered trial designs that emphasize at-home testing, 
  • Put systems in place to help patients report and cope with side effects,
  • Use adaptive or pragmatic trial designs to reduce use of pacebos. 

Communicating these patient-centric innovations concicely in recruitment materials could be a key part of stimulating interest in a new study. 




  • An online survey was administered to members of the Patients Like Me website between February and March, 2014. 
  • 6,819 members were invited to participate; the participation rate was 74% and the completion rate was 90%. 
  • Primary conditions of completers were: multiple sclerosis, Parkinson's, fibromyalgia, ALS, and type 2 diabetes. 
  • 31% reported being invited to participate in a clinical trial; 21% enrolled in a trial.