Sharing Stories of Clinical Trial Participation from Start to Finish

How mapping patients’ health journeys can drive a deeper understanding of their experiences and motivations

As our recent columns have shown, CISCRP’s 2017 Perceptions and Insights (P&I) survey-reaching 12,427 people around the world-elucidates areas of opportunity to improve clinical trials. The results show, for example, that more than half (58%) of the public reports that they would begin a search for a clinical trial by asking their doctor, yet the majority (73%) of people mention that they never or rarely discussed clinical trials as a treatment option.

Lengthy study visits (11%), travel time to the study site (23%), and the possibility of being placed in the placebo group (24%) continue to be challenges that study volunteers face when participating in a clinical trial. And when participation is over, 91% of patients feel it is important to receive a copy of their study results.

The P&I data is helpful in quantitatively providing insight into “what” current patient attitudes and experiences are regarding clinical trials.

CISCRP has begun conducting Patient Journey Workshops (PJWs) in a creative and intimate setting to begin answering the “why” and “how” behind the quantitative survey results. In these workshops, patients are given the opportunity to share their clinical trial journeys by visually recreating their intricate and personal stories. With this approach, patients with chronic illnesses can reveal how their experiences with available treatments might weigh into their decision to participate, as well as how the symptoms of their condition or additional socioeconomic factors might affect their experience with clinical trial participation.

Furthermore, through PJWs, patients can share why a streamlined transition back to standard of care is critical, and why receiving study results is paramount once clinical trial participation is over.

Diving beneath the surface

The PJW is framed by the clinical trial participation timeline (i.e., before participation, during participation, and after participation) to capture feedback from a group of patients in a chronological manner. The group of patients invited to participate can either reflect the demographics of study volunteers for a potential clinical trial, or represent a diverse group of patients with a mix of conditions and experiences, and offer insight into unique needs and preferences of a patient population along a clinical trial timeline.

During the first part of the workshop, participants are asked to share their past experiences with clinical trials. Questions regarding which communication channels are most relevant, where patients learn about clinical trials, and why they decided to participate are asked during the “before-participation” stage, to help provide insight to the nuances of the decision-making process. As implied by the P&I survey findings, the involvement and support of a healthcare provider can be very important to patients in their decision to participate in a clinical trial. The PJW approach can help uncover why patients view their doctor as a trusted resource-they may feel their doctor is most familiar with their health status and can best help determine whether a clinical trial is the optimal option for them.

At the “during-participation” stage, the workshop approach allows the participants to delve more deeply into experiences with study requirements and why they might be a hurdle for some. In past PJWs, CISCRP has learned that the severity of a condition and symptoms can impact a patient’s ability to complete questionnaires (hand-written ones especially, if issues with dexterity are present in the patient), to travel back and forth from the clinic, and to fast before clinic visits. This stage of the PJW has also revealed why certain socioeconomic factors make reimbursement and compensation critical, as it may be difficult for some patients to pay for travel out-of-pocket, to take time off work, or to afford childcare.

Finally, at the “after-participation” stage, the workshop has shown that having a clear plan in place to transition back to standard of care can help patients not feel abandoned after their trial participation has ended, and that patients value receiving their study results because this can help them determine if the study drug worked for them, and see how their participation helped others.

The sharing of the patients’ actual clinical trial experiences highlights the drawbacks of their participation, so that during the second part of the workshop, patients can use their past experiences to brainstorm the ideal clinical trial journey. Once the workshop is complete, the actual journey map is overlaid on the ideal journey map to identify areas of opportunity for the sponsor to consider.

The “so what?”

CISCRP’s experiences conducting Patient Journey Workshops have generated valuable and actionable insights for sponsor companies. As clinical trials become increasingly more customized to individual patient needs associated with rare and highly specialized disease conditions, there is much to learn by letting patients share their unfiltered experiences (see here and here).

Patient Journey Workshops differ from other methods of soliciting patient feedback, which often are more tailored to what sponsors want to learn, leaving little room for patients to share what is most important to them. By purposefully dedicating time to listen to patient stories and ideas for how to improve clinical trials, industry stakeholders can learn the underlying reasons why certain aspects of clinical trials are more important for patients than others.

Ultimately, clinical trials will be better suited to engage each patient from start to finish.

CISCRP Research Services: Nova Getz, Annick Anderson, Jasmine Benger