By Lauren Lawhon
Chief Operating Officer – Health Union
July 15, 2019

Healthcare professionals can be influential in a patient’s decision to participate in a clinical trial, but the impact is more nuanced – and multifaceted – than one might assume.

This is one of the key findings from a joint survey conducted by Health Union and BBK Worldwide. The latest of BBK’s “Study Voices” surveys – featuring perspectives from pharmaceutical and biotechnology sponsors, physicians, and patients – challenged the long-held notion that physicians are reluctant to refer their patients to other specialists for access to clinical trials. Bringing the patient and caregiver voice to the forefront of this issue, Health Union leveraged our 22 condition-specific online health communities to understand how patients’ relationships with their healthcare providers may (or may not) influence participation in clinical trials.

Health Union continuously brings people together in the shared experiences of life with chronic health conditions. Through a growing portfolio of online health communities, our company evolves social interactions into meaningful health conversations that help all healthcare stakeholders make smarter, more effective decisions. In May of this year, members of our 22 online health communities were invited to take this survey and, in turn, help clinical development decision-makers understand the factors people consider when learning about or participating in clinical trials. The response was impressive – with 667 patients and caregivers completing the survey – and very enlightening.

Nearly a quarter of patient respondents reported they have previously participated in a clinical trial. Specifically, those living with cancer or neurological conditions, such as multiple sclerosis and Parkinson’s disease, were more likely than those with other conditions, such as autoimmune disorders, to have clinical trial experience.

And the survey findings show that, not surprisingly, healthcare professionals are important influencers when patients decide whether to participate in a clinical trial. Nearly half of patient respondents who had participated in a clinical trial said their HCP told them about it. That number was even higher for cancer patients, with more than two-thirds saying their HCP had informed them about the trial.

The findings also reinforce that a positive patient-HCP relationship can be a positive influence on people’s willingness to consider a clinical trial as a treatment option. Consistent with other research we’ve done at Health Union, patients who are more satisfied with their current HCP said they were more likely to have participated in a clinical trial than those who aren’t – based on the top two and bottom three choices, respectively, of a five-point scale.

However, the findings also suggest the notion that HCPs are the gatekeepers of clinical trials – holding the keys to patients’ participation – is a misperception. Instead, there are a bevy of factors that patients themselves consider.

For example, patients identified HCP recommendation as the third most influential factor in deciding to participate in clinical trials, behind the potential benefit for themselves or others and understanding the risks and benefits. This finding is consistent with previous Health Union research that analyzed differences in patients’ experiences in clinical trials pre- and post-2013. Among clinical trial participants who did not learn about the study from their doctor, more than half reported they did not discuss the clinical trial with the HCP who regularly treats their condition before agreeing to participate. The top reasons patients had not participated in a clinical trial were that they weren’t aware of the option, they didn’t qualify for the study and/or transportation challenges.

Moreover, healthcare providers aren’t the only avenue through which patients are receiving information about clinical trials. Nearly a third said they found out about trials via online resources, such as internet ads, online communities and social media. This underscores the importance of digital awareness and education initiatives for clinical studies.

And even among those who reported they were satisfied with their current HCP relationships, patients said the idea of seeing a different HCP for care during a clinical trial would not significantly impact their decision to participate.

These survey findings illustrate that patients’ decisions to participate in clinical trials – or not – is multifaceted, and no single factor stands out as the No. 1 roadblock for patients. There is still much work to be done to understand how and why people choose a clinical trial, and to overcome misconceptions about barriers to enrollment.

By understanding the HCP’s role to influence clinical trial participation – from the patient’s point-of-view – these results illustrate the importance of educating community physicians about clinical trial protocols and enrolling them as advocates. However, continuing patient-focused awareness and education, as well as study support initiatives such as travel assistance and technology-enabled communications, is pivotal. Online communities, such as those cultivated by Health Union, can be particularly effective partners in engaging patients to consider clinical trials as a treatment option.

Learn more about patient perspectives and experiences in clinical research with Health Union’s business solutions in clinical services.