Understanding the patient journey is essential to an inclusive communication plan

By Jakki James, Director, Patient Communications

4 min

Understanding the patient journey is essential to an inclusive communication plan

Five strategies to build trust and engagement

Successful clinical research requires early and continuous education of healthcare providers (HCPs), patients, and caregivers about the disease, other available therapies, and an understanding of treatment options after the study has ended. Understanding when, where, and how in the patient’s life and treatment journey the clinical study fits is imperative. Designing and implementing a holistic healthcare communications strategy for HCPs and patients builds trust and engagement within medical and patient communities, facilitates early identification and enrollment, and advances treatments and patient access. At Parexel, we have identified key elements that are hallmarks of successful clinical trial communications.

Engage early. 

Many inflection points exist for people with rare, complex, and chronic diseases. One is whether to participate in a clinical trial or not. Few investigators or sponsors can predict how an ideal decision-making conversation may occur.  At Parexel, we emphasize that the discussion should provide patients with meaningful answers to their questions and concerns, including:

  • What happens after the clinical trial, which is just a temporary moment in their life? 
  • Will they be eligible (or ineligible) for other trials after participating? 
  • Will the potential side effects conflict with their treatment and quality-of-life/professional goals? 
  • How will they need to coordinate care and information with any of their other HCPs?

It is critical to engage patient advocacy groups (PAGs) as trusted sources of patient insights in early development, as well as study champions and referral networks.

Journey and influence mapping helps to determine which HCPs send patients to principal investigators (PIs) and how the referral network functions in each disease. 

Sustain the conversation. 

During the study, various issues or concerns may arise from the participant that the investigator or other HCPs must address to keep the participant engaged. For example, many people need transportation or other support services. They may request updated information on their disease and new data or treatment options. And managing adverse events or other health-related complications can be a challenge.

At Parexel, we integrate continuous feedback loops between participants, investigators, PAGs, and HCPs to anticipate these issues and create educational materials that can be provided proactively and referenced to minimize, if not eliminate, any interruptions in study engagement.

Make content inclusive.

Incorporating the patient voice into medical communications means understanding, acknowledging, and applying precise, community-specific vocabulary that resonates with members of the whole patient community. At Parexel, we have created inclusive language training modules for medical communications employees focused on content development. These modules cover race, ethnicity, gender identity, disability, and socioeconomic considerations. They provide guidelines for using the correct terminology and imagery within different communities and promote inclusive communication in day-to-day conversations and written or visual materials.

It is important to tailor content based on the level of patient experience by considering the specific disease or condition, the stage of diagnosis, and the patient's existing knowledge.

Distribute content thoughtfully.

Gathering insights into patients' preferences about how they like to receive clinical trial information can make a difference in connecting with your target audience. Bite-sized chunks of content, linked to further information available in multiple formats and accessible via different delivery channels, can provide a multi-layered approach, helping bolster engagement. Adapting to a digital and AI-driven world and the evolving preferences and behaviors of different age groups and demographics can help make content more inclusive and engaging.

For a current project in Japan for a pediatric indication, we proposed storytelling apps and a website alongside a printed postcard. The postcard included a coloring-in picture on one side to engage children and a QR code on the other for parents to access more information about the study. Using a multi-format approach, the content was tailored to each specific demographic and location of the study.

Use patients' experience.

Reviewing specific projects with patient focus groups can improve the trial communication plan because they can provide feedback on whether materials use appropriate language and vocabulary.

For example, we recently produced a series of newsletters for bronchiectasis patients enrolled in a study. Bronchiectasis is a chronic, incurable respiratory condition in which the lungs’ airways are inflamed and thickened, causing excess mucus. Patients often cough incessantly, producing large amounts of phlegm. We reviewed the newsletter content with a patient focus group over three months. The patients urged us to include articles on topics we hadn’t considered, such as managing bronchiectasis symptoms during the hot summer (heat often exacerbates the condition) and diet and nutrition tips (maintaining an ideal weight can support lung function). They also checked with their doctors and fellow patients to ensure the language and vocabulary used in the newsletters were accurate and relatable to their community. In this case, we leveraged patients’ ideas and interests to enhance engagement during the trial.

Contributing Expert