The clinical trial industry is undergoing significant transformation, particularly in the realm of patient experience. As trials become more patient-centric, understanding the diverse perspectives and needs of participants has never been more critical. Recent surveys conducted by Advanced Clinical, in collaboration with StuffThatWorks and KnowRare, shed light on crucial aspects of the patient experience in clinical research. Responses were captured from over 500 patients across various conditions, with a substantial 42.7% having at least one rare disease. Insights from the survey reveal key trends in communication, logistical preferences, and demographic influences that shape patient engagement and retention in clinical trials.

Here are 6 key insights from the survey:

1. Communication Needs Improvement

In the survey, patients were asked questions about their previous clinical research experience, logistical preferences for clinical studies and interest in participating in the future. The participant responses to questions asking if they felt prepared, updated, and informed throughout their clinical study experience uncovered key trends in communication. Patients generally reported feeling adequately informed prior to participation, but a disproportionate number of patients answered that they were “not at all” updated throughout their study. Additionally, the data suggests that this issue was more pronounced among North American respondents than European respondents. Specifically, 23.2% of North American respondents reported that they did not feel updated at all during their study, compared to only 10.7% of European respondents. Thus, there is a clear opportunity to improve communication and better support patients in their clinical studies.

2. Preferences for Digital Communication

Using online apps for sharing supplemental study information with patients during clinical trials corresponded with significantly higher patient-reported quality of communication. Among clinical study participants who did not receive supplemental study information through an online app, a strikingly high proportion reported that their experience could have been improved if they had access to an online app or website with study-related information. These findings strongly indicate a preference among patients for digital communication channels.

3. Importance of Being Informed About Logistics

Age played a nuanced role in patient preferences. For one, age tended to be positively correlated with patient-reported importance of being informed about logistics and context when deciding whether to participate in a clinical study, but negatively correlated with interest in being provided with comfort items. Notably, patients in the 36-44 age bracket expressed the highest interest, on average, in being provided with comfort items, while patients 65 or older expressed the lowest interest. Of all metrics, the patient-reported importance of being informed about whether the study design involves a placebo drug when deciding whether to participate in a study had the strongest positive correlation with age. These insights provide key considerations regarding patient profiles when planning for recruitment and retention.

4. Where Patients Seek Information

The survey also revealed how several demographic factors may influence where patients seek clinical study information and why they would consider participating. European respondents reported noticeably higher interest than American respondents in seeking clinical study information relevant to their condition from governmental clinical study websites, whereas Americans expressed higher interest in seeking such information from doctors.

5. Motivations of Patients with Rare Diseases

Moreover, patients with rare diseases exhibited distinct motivations for participating in clinical research. On average, they were more inclined to seek out clinical research options early in the disease journey. Further, they tended to answer that receiving personalized care motivated them to participate in clinical research more heavily than the prospect of receiving the latest treatment in development.

6. Gender Differences in Motivation

Gender also factored into survey responses. Female patients showed a greater interest in early engagement with clinical study options and were more likely than male patients to participate for the sake of receiving specialized care. In contrast, male patients were more likely to be motivated by the prospect of accessing newer and more advanced treatments.

Embracing a Patient-Centric Future

The survey responses underscore the diverse perspectives of patients in clinical research, emphasizing the importance of effective communication, digital tools, and the consideration of patient profiles in planning clinical trials. Addressing these insights can promote a more patient-centric approach that provides a better clinical experience and leads to more robust research outcomes.

Co-Authored by: Cole Dillaplain, Patient Engagement Intern

If you liked this blog, be sure to check out our other related resources: 

✅ Patient and Caregiver Perspectives White Paper

✅ Making Rare Disease Clinical Trials More Patient- and Site-Centric