June 14th, 2017

New Survey Highlights Need for Better Patient Engagement in Clinical Trials


A new survey indicates that when it comes to patient engagement in clinical research, there’s still a lot of room for improvement.

The rise of the internet, mobile technologies, and social media has caused a fundamental shift in patient preferences, which has had a major effect on the clinical trial industry at large. Recruiting qualified participants for clinical trials in a cost- and time-efficient manner has always been a challenge, but as patients have become more and more empowered, they’re expecting more from their healthcare experiences. If clinical trials want to attract and retain participants, they need to make sure they thoroughly understand the needs and expectations of the modern patient.

Avoca Quality Consortium (AQC) recently commissioned an extensive patient survey in an effort to determine what sponsors, CROs, and investigator sites can do to improve the overall clinical trial experience, thereby driving better participation and awareness in the future, which was then written up by Applied Clinical Trials (ACT). Here are of the key takeaways from the study.

Do Providers Understand Their Patients?

The AQC study found that most respondents “did not feel that their healthcare providers had a very good understanding of what it was like to be a patient with their condition.”

Patients’ explanations for their responses included:

  • The perception that providers failed to understand their experience, pain, and/or symptoms
  • A “lack of vocabulary or self-tracking”
  • The perception that providers don’t take the time to understand, either because they’re too busy or don’t feel compelled to
  • The feeling of being passed around to different providers to the point that each only sees (and therefore understands) “a piece” of the patient

Why Do Patients Participate In Clinical Trials?

45% of the survey respondents had participated in at least one clinical study in the past. Of those who had previous experience with a trial, the most commonly cited reason for participating was “the opportunity to contribute to science” (69%). The second most common was “the opportunity to learn more about their conditions” (51%). Third was “financial considerations” (39%) – note: respondents were invited to select as many of the provided reasons as were relevant.


Interestingly, AQC found that the variety and severity of the condition had a minimal impact on patients’ top few reasons for participating. As you might expect, patients with chronic and/or degenerative diseases were more likely to be “motivated by additional contact with and access to better medical professionals” than patients with episodic conditions. Conversely, patients with milder conditions were “more likely to be influenced by access to free healthcare” than those with serious illnesses.

Demographics also played a role in patients’ motivation for participating in clinical trials. For patients 76 and older, the most commonly cited reason for participating was “the additional expected contact with doctors and nurses was a key reason for participation.” For younger patients, the key driver was “access to better doctors and hospitals.”

Key Patient Concerns

In the AQC survey, 67% of patients who had participated in a clinical trial before said they would recommend participating to a loved one or friend. For those respondents who said they would not recommend participation, explanations typically involved a concern about the efficacy of treatment or receiving a placebo, or “a general distrust of the clinical research industry.”

What Can We Be Doing Better?

As the authors of the ACT article aptly point out, “Overall, the results from this study lead to the clear conclusion that as an industry, we can do more, today, to impact both patients’ perceptions of clinical trial participation, and the relevance of our trial designs to patients’ personal experiences of their diseases.”

Results from the survey suggest several tactics that could improve study outcomes:

  1. Adopting a patient-centric approach to trial design (i.e., sourcing patient input when designing both the protocols and operational elements of a new study)
  2. Demonstrating genuine care, respect, and concern for patients (which could include compensation)
  3. Improving communication and transparency at every level

At the end of the day, improving patient recruitment and retention is going to require something of a paradigm shift. In other words, the industry needs to focus far more of its attention on patient education, communication, and appreciation. “Although at present it is still acceptable from a regulatory perspective to define the research questions to be addressed by protocols in traditional ways,” the ACT authors explain, “the ability to obtain approval for and competitively market medical products will likely soon depend on incorporation of the patient perspective.”