Clinical trials are at the heart of medical innovation. They help researchers test new treatments, improve existing ones, and discover cures for diseases. However, many people, particularly in underserved communities, are unaware of clinical trials or face significant barriers to participating in them. The PAN Foundation, a national healthcare advocacy organization, is tackling these challenges head-on through its Opening Doors to Clinical Trials initiative.
BlackDoctor.org spoke with Amy Niles, the Chief Mission Officer at the PAN Foundation, to discuss the importance of clinical trials, common misconceptions, and how the PAN Foundation is helping to break down barriers to participation.
What Are Clinical Trials, and Why Are They Important?
Clinical trials are research studies conducted to evaluate the safety and effectiveness of new medical treatments, devices, or procedures. They are a crucial step in advancing healthcare, offering benefits such as:
You May Also Like
- Access to Cutting-Edge Treatments: Participants often gain early access to innovative therapies that may not yet be widely available.
- Improving Medical Knowledge: Clinical trials help researchers understand how diseases progress and how different populations respond to treatments.
- Advancing Public Health: Findings from clinical trials contribute to new standards of care, benefiting current and future generations.
Despite these benefits, many patients are not fully aware of clinical trials as a potential treatment option. Others may face challenges that prevent their participation.
Common Barriers to Clinical Trial Participation
Several factors discourage or prevent patients from considering clinical trials:
You May Also Like
- Lack of Awareness: Many people are not informed about available trials or do not know how to find one that suits their needs.
- Mistrust in the System: Historical mistreatment of certain groups in medical research has created a lingering mistrust of clinical trials, especially among underserved communities.
- Logistical Challenges: Barriers such as transportation, childcare, time off work, and financial constraints often make participation difficult.
- Limited Conversations with Providers: In many cases, healthcare providers do not discuss clinical trials with their patients, leaving them unaware of potential opportunities.
PAN Foundation’s Role in Breaking Barriers
“Recently, we expanded our mission, which is to accelerate access to affordable, equitable healthcare,” Niles tells BlackDoctor.org
The PAN Foundation’s Opening Doors to Clinical Trials initiative aims to empower patients with the knowledge and resources to consider clinical trials as a viable treatment option. The program focuses on three key areas:
1. Educating Patients
The PAN Foundation has launched a digital platform to help patients understand clinical trials. This website provides:
- Clear, Accessible Information: Simplifies complex medical jargon and explains the trial process.
- Myth-Busting Resources: Addresses common misconceptions and historical mistrust while highlighting progress in clinical trial diversity and ethics.
- Personal Stories: Features testimonials from participants, whose experiences help build trust and inspire others to explore clinical trials.
“We created clinicaltrials.PANfoundation.org to increase health literacy. The platform offers resources like stories from people like Bill [Allen], discussions on past practices that caused mistrust, and the progress made in clinical trials,” Niles says.
2. Simplifying the Search Process
Finding the right clinical trial can be overwhelming. To make this easier, the PAN Foundation offers a user-friendly Trial Finder Tool. This tool helps patients navigate available trials and identify those that align with their treatment needs.
3. Providing Personalized Support
For patients who need additional guidance, PAN’s Companion Access Navigators are available to:
- Answer questions about clinical trials and eligibility.
- Help patients overcome logistical challenges, such as transportation or childcare.
- Connect individuals with local resources to support their participation.
“Our goal is to empower patients to have conversations with their healthcare providers and consider clinical trials if it’s the right option for them,” Niles adds.
Why Diversity in Clinical Trials Matters
Historically, certain groups—such as racial and ethnic minorities, older adults, and people from rural areas—have been underrepresented in clinical trials. This lack of diversity can lead to treatments that are less effective or have unforeseen side effects in these populations.
The PAN Foundation is committed to ensuring that clinical trials reflect the diversity of the communities they serve. By educating underserved communities and addressing logistical barriers, the foundation is fostering a more inclusive approach to medical research.
“Many healthcare providers don’t bring up clinical trials due to time constraints, lack of knowledge, or other barriers,” Niles shares. “We want to understand these barriers better and provide resources to help healthcare teams, including nurses, financial navigators, and office staff, feel more equipped to discuss clinical trials with patients.”
Moving forward, PAN hopes to continue to increase patient access to clinical trials in the following ways:
- Community Engagement: “We’re starting to engage at the local level to understand and address challenges specific to those communities,” Niles says.
- Collaboration: “We’re partnering with like-minded organizations to expand our reach,” Niles says.
- Social Determinants of Health: “We’re addressing barriers like transportation, childcare, and financial challenges that prevent patients from accessing trials,” Niles says.
- Advocacy: “We support legislation that promotes diversity in clinical trials and are actively pushing for change in Congress,” Niles says.
How to Get Started with Clinical Trials
If you or a loved one is considering a clinical trial, here are some steps to take:
- Visit PAN’s Digital Platform: Start at clinicaltrials.PANfoundation.org to learn more about clinical trials and explore available opportunities.
- Speak with a Navigator: Call PAN’s Companion Access Navigators at 1-855-329-5969 for personalized support and answers to your questions.
- Talk to Your Healthcare Provider: Bring up clinical trials during your next visit. The PAN website offers tools to help guide this conversation.
