We’ve all attended patient conferences on behalf of our organizations—as sponsors and exhibitors in particular. Advocacy organizers may also invite pharma sponsors to present to their patient and caregiver attendees. These events offer a unique opportunity to not only share information with patients and caregivers but also to learn from and get to know those benefiting from your products.
Since 2012, at least half of U.S. adults have one or more chronic diseases.1 It’s therefore likely that many patient conference attendees are actively managing health concerns and can consider several points of view on any given issue. It’s beneficial to reference your own personal healthcare experiences when thinking about participating in a patient conference. Wearing both your industry and patient or caregiver hats can help you personalize and enhance your presence at patient conferences.
Think About Your Audience and Their Needs—and Be Authentic
At a recent advocacy-led conference for people with myeloproliferative neoplasms, a group of bone marrow cancers, representatives from each of the four industry sponsors presented to patient and caregiver attendees. Given the challenging pre-lunch time slot, the presenters introduced themselves by clinical or corporate title and proceeded to power through a condensed version of what seemed like their standard presentation to healthcare professionals.
In our assessment, representatives missed an opportunity to develop a genuine connection with the audience as they were understandably focused on imparting key information about their product pipeline. An alternative health education technique would have considered the knowledge, beliefs, behaviors, and needs of the audience. This would have enhanced the relevance and value of the material through a more tailored, patient-centric approach.
In taking this approach, one might first think about the following: What do patients and caregivers know and understand about clinical trials and their design? Would patients and caregivers know what an observational study is and why it’s conducted? Would they know what refractory disease is and how the discussed treatment in a Phase II clinical trial might be of benefit?
Strike a Balance
We recognize pharma must strike a careful balance as sponsors and be sensitive not to intrude upon a patient-focused event. However, we would also welcome and appreciate a demonstration from these representatives of their concern for patients and of their commitment to finding treatments for their disease. And while time limits are always a factor, it’s not a reason to speed through a presentation that’s full of scientific terminology and may be unfamiliar to many in the audience.
The National Cancer Institute estimates that fewer than 5% of cancer patients enroll in clinical trials as a result of their limited knowledge and negative attitudes about participation.2 Patients and caregivers attend conferences to become better educated and more informed about managing their disease and to learn about treatments on the horizon. We can help reduce these barriers and make it easier for patients and caregivers to know about and access cutting edge treatments.
Consider these suggestions as a checklist that will make your involvement more impactful for patients and caregivers:
- Tell patients what’s in it for them. Of course, you should share clinical trial updates and announce the latest recruitment efforts. Patients and caregivers want to know what treatments will be available, but you should make the information easier to understand by defining key terms or briefly describing the trial design and what it means. Be sure to tell patients and caregivers how their participation can ultimately help them or help clinical researchers identify treatments. Suggest where they can learn more about the trials.
- Use the opportunity to learn more about your patient population rather than just pushing information out. Include caregivers in your delivery to connect with them.
- Focus on making your presentation as visual and engaging as possible.
- Connect with your audience by speaking in plain language that’s understandable and relatable.
- Consider showing a short video about what your company does for, and with, its target audience and clinical researchers.
- At exhibit tables, get feedback from attendees regarding your patient website, educational materials, and support programs.
- Ask attendees what type of info they value or want more of and how they would like to receive it.
- Make sure to place your printed materials at conference tables where the patients and caregivers are seated.
- Recognize that many of the attendees are the empowered patients who take the time and have the inclination to attend a conference. Indeed, they may also be patient leaders or activists who are influential on social media and in other settings, sharing what they’ve learned with their healthcare providers, family members, and own social media audience who may be concerned about them and their treatment.
- Think about what you want patient and caregiver attendees to take away from the conference to share with others in their own social media audience while at the conference.
Have a Conversation
You can participate not only as a company representative, but also as an individual devoted to treating disease and improving patients’ lives. Share what you hope to learn from your attendance at the conference. Your participation should feel authentic. Be available for questions and to chat after the conference or during breaks. Use the event as a chance to communicate with your patient population and gather their insights and feedback about your communications and to support efforts directed to them. Have a conversation that matters.
1. “Chronic Diseases: The Leading Causes of Death and Disability in the United States.” The Centers for Disease Control website.
2. “Video Intervention Helps Prepare Patients to Participate in Cancer Clinical Trials.” National Cancer Institute website.