The PAN Foundation Expands Resources For Underserved Patient Populations

A conversation with the PAN Foundation Chief Mission Officer Amy Niles

While 80% of people of color and LGBTQIA+ individuals have a positive perception of clinical trials, only 20% have been approached by a healthcare provider, according to a 2024 study by the Patient Access Network (PAN) Foundation.

The realization — that these minority populations simply aren’t made aware of clinical trials fitting for them — reinforced PAN’s commitment to accelerate access to affordable and equitable healthcare. In fact, it spurred them to lean further into their clinical research focus area to better support underrepresented patients in clinical research.

In its 20-year history, PAN has already helped more than 1.2 million people afford their medications, providing about $4.5 billion in financial assistance. It has also advocated for patient-centric policy solutions that will improve access to care, such as the Medicare reforms that were passed as part of the Inflation Reduction Act taking effect January 1, 2025. Now, as described by Chief Mission Officer Amy Niles, the PAN Foundation is expanding its clinical research resources with its Opening Doors to Clinical Trials initiative.

In this series on underserved patient enrollment, we will meet and strive to understand the experiences of Amy, who’s charged with raising awareness and participation in clinical research, and two minority patients, Tony and Bill, who had polar opposite experiences in clinical trial enrollment.  

Clinical Leader: What is Opening Doors to Clinical Trials, and why is the program necessary?

Amy Niles: We did a national poll of more than 4,000 adults in the country, and we over-sampled traditionally underrepresented communities, for example, people of color and the LGBTQIA community. We all hear about people not participating in clinical trials because of mistrust in the healthcare system and egregious practices in the past. And certainly, we are not shying away from any of that. We know that those practices happened. But what our national poll found was that patients have a strong interest in learning more about clinical trials and seeing if clinical trials are right for them.

Our initiative aims to improve health literacy around clinical trials through a digital platform. So, you'll see very comprehensive information about clinical trials. And we have a whole section around the mistrust. We think it's critically important to address and acknowledge it. However, a key goal of the digital platform is to empower people, especially underrepresented communities, with the information they need to decide for themselves whether a clinical trial may be a good treatment option.

Second, as part of the digital platform, we have created a tool called Trial Finder, which is a more consumer-friendly way of finding a trial than clinicaltrials.gov. Clinicaltrials.gov is extraordinarily comprehensive, but it's challenging to navigate if you're a patient. Trial Finder allows an individual to use filters to find a clinical trial that may be close to them, within a certain geographic distance, or that may be appropriate for them in other ways.

What really differentiates us is our ComPANion Access Navigator service. We have live people in our call center who answer questions from patients about clinical trials, such as “How do I have this conversation with my physician about a clinical trial?” and  “How do I address the costs that come with clinical trials because affordability is a big concern of mine?”

We're having many conversations with patients around social determinants of health, because oftentimes these social determinants of health prevent people from accessing the care they need.

What are the social determinants of health that are impeding people from accessing clinical trials?

Cost is always one factor. We see that every day at PAN. People are coming to us because they can't afford their treatment. It's similar with clinical trials and geography. People in rural communities often don't have the resources to drive to an academic center 200 miles away. We find resources or programs that can help them get there or help in other ways if patients can't take time off work or have childcare issues. Our ComPANion Access Navigators identify local resources in communities throughout the country to help people overcome these barriers that are quite common and prevent people from accessing the care they need.

How do patients find out about the ComPANion Access Navigator service?

We have a digital education platform on our website.. We are forming partnerships with many other organizations and academic centers because we know that the need is so great. If we want to advance medical care, if we want to truly address health equity, we need to partner together. So, we're reaching out and collaborating with other organizations.

It sounds like you would be a good resource for doctors’ offices or healthcare providers that don't have the resources or the staff to answer these questions on their own and instead can point to you as a resource.

You're absolutely right. Our national poll found that mistrust was not the top reason why people were not participating. Rather, people were not being asked to participate.

Across the board, we found only one in five individuals were having these conversations with their healthcare providers. Either the healthcare provider is not starting that conversation and seeing a clinical trial as a potentially viable treatment option for the patient, or the patient isn't empowered to have that conversation or know the right questions to ask. So, that is a key focus of the initiative.

We see this as a multiyear initiative, a movement where we are trying to empower patients to see clinical trials as viable treatment options. We found also that among people of color,  83% said that they were somewhat or extremely positive in their perception of clinical trials. Similarly, in the LGBTQIA community, 86% had positive perceptions, and yet only 65% considered participating. Again, they're not having these conversations with their healthcare providers and that's what we need to overcome.

For these communities, the LGBTQIA and other minority groups including Black people, how can a program like this help address their specific needs?

I think the better question is, “How do we get those communities engaged in clinical trials?” We are all different. Every single one of us is different, but unless we include underrepresented communities in the clinical trials, it's hard for us to say that a certain treatment or a certain medication is right for all. It comes down to how we extend our outreach to these communities to encourage them to think about participating in clinical trials.

That's why we have a national campaign, that's why we are forming partnerships with other organizations, and that's why we have great spokespersons like Tony and Bill, who have experience and want to participate in clinical trials. There's no one answer, but I think the key focus for all of us is making sure these communities are invited to the table to have the conversation.

[Editor’s note: Learn about Tony’s unsuccessful attempt to enroll in a clinical trial here, and discover how Bill enrolled in a clinical trial here.]

What partnerships have you initiated or would like to initiate to reach these target populations?

There's no one organization. I've been in the patient advocacy community for a very long time; there are wonderful patient groups and provider groups that are specifically focused on the African-American community or LGBTQIA community. For example, Out Care is an organization we've worked with at  the PAN Foundation that focuses on the LGBTQIA community. We've also had great relationships with organizations such as the National Medical Association, which is composed of African-American physicians, and the National Association of Hispanic Nurses and other healthcare professionals, who are so critical to reaching patients.

In fact, I often say physicians are really important, but they're busy. If we can work also with the nurse, social workers, and nurse navigator communities, we may be more successful in reaching and educating more patients.

These are relatively new programs. Did the survey alone prompt the creation of this program, or did you see gaps long before that?

We saw gaps a couple of years ago. This is nothing new, but as an organization, we have expanded significantly. So, our focus on advocacy and education has really been accelerated over the last couple of years. We see our mission as much broader than providing just the financial assistance piece.

Our focus on advocacy and education has an underpinning of health equity. We know that we need to do more to accelerate access to care. So, we knew we needed to address clinical trials. Our national poll validated in many ways the work we had already begun and the work we want to do. We're just beginning. We know education and outreach are going to take time, and we're committed to that. We know that our ComPANion Access Navigator program will probably need to grow because as we gain success, those phone lines are going to be ringing a whole lot more. We're going to learn more from the people who are calling us about what their needs are, and we can translate that information into further program expansion.

What then does success mean for the Navigator service or the Opening Doors initiative? How do you measure that in the coming months and years?

Ultimately, our collective success, which is really hard to measure, is driving more diversity in clinical trials. And that's not going to happen solely because of our initiative. Other companies and organizations are involved, and Congress is certainly interested in ensuring diversity in clinical trials. It's going to take our collective effort to hopefully over time see that more people of color or more diverse communities are included.

We're monitoring our website traffic and we're seeing that grow. We're monitoring our calls to the companions and, as I just shared, we're collecting that important data because we want to understand, more deeply than perhaps what the poll shows, things like “What are the issues that the people considering clinical trials are really concerned about? What are they and how can we overcome them?” It's piece by piece, little by little, chipping away at the barriers that so many people face in accessing the care they need.

It sounds, particularly with the Navigators, that it will be a great feedback loop for hearing specifically what people want and need to participate in clinical trials, and then adapting your services to meet those needs as they evolve.

Exactly. One of the PAN Foundation’s unique features is that we're disease agnostic. We can be at a 30,000-foot level and see across many different disease areas and health concerns, what the challenges are that people are facing, and how we can address them.

Have you noticed any successes or challenges with launching these programs?

With more people visiting the digital platform, we believe that our messaging about the importance of diversity in clinical trials is resonating. We know from our pre-launch focus groups that 36% of those people thought a clinical trial might be good for them before they read the content on our digital platform. After reading the content, that jumped up to around 70%.

We're also hearing that people want more information about financial resources for clinical trials, safety, and confidentiality issues. It’s very early on, but this feedback is important to us because it will help drive additional content or programming that may be needed.

As for pharmaceutical companies, how might they support your efforts?

Since developing this platform and our program, we have not partnered with pharmaceutical companies or received any contributions from them. The PAN Foundation felt strongly from the beginning that we should fund this initiative ourselves as an organization rather than turn to outside sources. That said, we know that it takes resources to continue this work. We welcome conversations with pharmaceutical companies, foundations, patient groups, and provider groups, because this issue is too large to tackle on our own.

About the Expert:

Amy Niles is a healthcare executive passionate about building sustainable health organizations, advocating for patients, and developing strategic partnerships to address public health needs. As PAN’s Chief Mission Officer, she leads education initiatives, program development, clinical affairs, and advocacy strategy, overseeing public policy, external relations, and communications.

Since establishing PAN’s national advocacy platform in 2013, Amy has guided the organization to become a “go-to” resource for stakeholders and policymakers through proactive legislative and regulatory analysis. Her insights have been featured in The New York Times, TIME, and HuffPost, and she has authored articles on Medicare reforms and affordability.

She has also led successful initiatives, including the Together Rx Access program, and co-founded the National Women’s Health Resource Center (NWHRC), growing it into a leading clearinghouse for women’s health information. With over 30 years of experience in health nonprofit leadership — including strategy, relations, and governance — Amy is respected for her expertise and dedication to every person PAN serves.