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W 27: Is the World’s Third Largest Pharmaceutical Market Ready for Patient-Centric Clinical Trials?

Poster Presenter

      Saumya Shankar Nayak

      • Associate Director, Patient Recruitment Programs, Asia Pacific
      • IQVIA


This study aims to gain a better understanding of patient advocacy and/or support groups’ (collectively patient groups) current landscape in China; mainly, their size, structure, experience and interest in driving patient-centric clinical trials.



In total, from 28th Sep to 16th Nov 2015, 121 patient groups were contacted in China. The groups were sent an electronic survey & followed-up by telephone or instant messages for survey completion. Of the 40 respondents, data from 35 groups interested in clinical trials were analyzed qualitatively.


The survey response rate was 33% i.e., 40 groups completed the survey out of 121 contacted. Of the 35 groups (out of 40) interested in supporting clinical trials: - 63% are small sized groups (with less than 1,000 members) of which, ? 50% have experience in supporting clinical trials ? 82% have either a Patient Advocate or Patient Expert within their group ? 73% communicate by telephone with members on a regular basis ? 73% have regular face-to-face meetings - 17% are medium sized groups (with 1,000 to 10,000 members) of which, ? 50% have experience in supporting clinical trials ? 100% have both Patient Advocate and Patient Expert within their group ? 83% communicate using digital platforms (QQ, WeiBo, WeChat, etc.) with members on a regular basis ? 83% have regular face-to-face meetings - 20% are large sized groups (with more than 10,000 members) of which, ? 100% have past experience in supporting clinical trials, have both Patient Advocate and Patient Expert within their group, communicate using digital platforms with members and have regular virtual meetings in addition to face-to-face meetings. Patient-centric activities that are of interest to more than 70% of groups per category (small, medium & large sized): - Small sized groups: 73% are interested in sharing information/advice on specific clinical trials - Medium sized groups: 83% are interested in referring patients to clinical trials and sharing information/advice on specific clinical trials - Large sized groups: 80-100% are interested in supporting a continuum of patient-centric activities such as: ? Connecting patients with biopharmaceutical companies to uncover patient insights on disease and treatment ? Referring patients to clinical trial sites ? Sharing information/advice on specific clinical trials ? Working with researchers to design/improve trial protocols ? Participating in round table consortiums with pharmaceutical companies to give feedback on trial outcome.


The bio-pharmaceutical industry is undergoing a paradigm shift in focus from ‘product-centric’ to ‘patient-centric’. Patient-centricity in a clinical trial means designing and conducting a study in a way that is responsive to patient preferences, needs and values; it requires patients to be proactive in providing feedback. By incorporating patient-voices, the industry can address the greatest challenges (protocol design, enrolment delay & retention) of conducting clinical trials. Bio-pharmaceutical companies in the US and Europe are evolving at fast pace towards patient-centricity by collaborating with patient groups. China being the 3rd largest pharmaceutical market is no different per our investigation. There are hundreds of patient groups in China varying in size, structure and interest. Most of these groups, especially large sized are willing to broaden their horizon by supporting patient-centric activities. Creating a ‘heat map’ of patient groups is beneficial for bio-pharmaceutical companies as different groups may prove more valuable collaborators at different stages of the clinical trial based on their interest. China will continue to top the list of country attractiveness index for conducting clinical trials by offering yet another benefit of conducting patient-centric trials in collaboration with patient groups.