Show Me the Evidence: Data to Understand and Break Down Patient Access Barriers!

“Data makes you credible; stories make you memorable,” began Amy Niles, Chief Mission Officer of the PAN Foundation, during the Biotechnology Innovation Organization’s (BIO) monthly patient advocacy coffee chat entitled “Show Me the Evidence: Data to Understand and Break Down Patient Access Barriers!” The webinar focused on the role of data in advocating for policy change.

And there is clearly a lot to do!

“Whether it’s prior authorization, step therapy, copay accumulators, increasing consolidation in the healthcare system, or any other barrier, patients face a wide range of challenges in navigating access to care. Data is crucial to understand both the impact of these access barriers on patients and to guide policy solutions,” explained Karin Hoelzer, Senior Director of Patient Advocacy, who moderated the panel discussion.

For instance, “according to a survey of 1,400 arthritis patients, more than 50% had to try two or more drugs before getting the one originally prescribed to them. Data points like these bolster policy positions and allow patient groups a seat at the table,” explained Anna Hyde, Vice President of Advocacy and Access at the Arthritis Foundation.

“There’s nothing more powerful, frankly, than walking into a policymaker’s office with hard data, as well as the individual whose story backs up that data,” affirmed Kirsten Sloan, Managing Director, Public Policy, American Cancer Society Cancer Action Network. “It’s so hard to look somebody in the eye and tell them that you don’t agree with them when they’ve got the data and their story right there.”

So, how are patient advocacy organizations gathering data, what is the data telling them about patient needs, and how are they making an impact with the numbers?

The power of data to break down access barriers

“About a year ago now, the PAN Foundation launched its Center for Patient Research,” Niles, explained. “Through the Center, we are able to poll patients who are living with serious illness, chronic conditions, and rare diseases, to gain their perspectives and experiences when it comes to their healthcare, and importantly, the challenges that they face accessing the care they need.”

The foundation’s findings on the state of healthcare access among patients with a chronic health condition provided a solid foundation for the day’s discussion—but the numbers were not encouraging.

“Earlier this year, we unveiled the 2025 findings of our State of Patient Access initiative, and the overall grades are abysmal,” Niles said. Measured in a traditional grading system (A–F), the overall score for the “access to care” dimension of the national poll came in at C+ (78.9) for both 2024 and 2025.

“What we found disappointing is that more people are having problems accessing their prescription medications,” she said.

Respondents with insurance who take prescription medication cited prior authorization rules (16%), step therapy requirements (10%), or a determination that their drug was not essential (9%) or unnecessary (8%) as barriers to getting the medications they need.

Other metrics that PAN measured didn’t fare much better. For 2025, adults living with chronic conditions gave poor grades to several national poll dimensions, including:

• Access to treatment through healthcare plans—D- (63.1)
• Financial toxicity—D+ (68.8)

“The financial toxicity scores are concerning—a reflection of the challenges people face affording their care as well as growing medical debt.”

“This is the kind of data that for us at PAN, and perhaps for all of us on the call, validates the policies that we’re already advocating for,” said Niles. “It may point to additional policy that we need, and it helps us think through what additional education patients and healthcare providers need.”

Data from the National Eczema Association (NEA) echoed many of the PAN findings as well. To date, NEA has published more than 20 studies in various medical journals, with a portion focusing on characterizing and quantifying access barriers for patients with atopic dermatitis, ranging from coverage delays and denials to the financial and treatment access burden.

Similar to the Arthritis Foundation Survey, the data clearly show that almost 50% of respondents experienced at least one coverage delay or denial in the past year—and more than half of all respondents said they would not know what to do if they faced an issue with their prescription coverage. More than 65% of respondents experienced comorbidities associated with atopic dermatitis, many of whom faced access issues for comorbid prescriptions as well.

“We have an in-house research team that does the analysis. But before any of that happens, they have a lot of conversations. They have discussions with members of our community, whether they be part of our ambassador program or are in our regular community. And, echoing what the other panelists have said, it really drives our policies forward,” said Michele Guadalupe, Director of Advocacy and Access, National Eczema Association (NEA).

Guadalupe discussed how the data allows her organization to stay current on the advocacy needs of their patients.

“When I started, we had a list of policy priorities, but we certainly have been able to fine-tune them over the years,” she said, explaining that the NEA found almost the exact same statistics as PAN when it came to access.

“50% of patients had experienced denials in the arthritis world,” Guadalupe explained. “That was almost verbatim what we found in our access to treatment survey, which found that patients face about 50% denial. That is an issue that I know our patients and our caregivers will talk a lot about.”

These results were consistent with the findings of the other organizations on the call, regardless of methodology and therapeutic area—validating the findings and their importance to the patient community.

The value of data in driving health policy

“Our public policies are based on evidence and science,” said Kirsten Sloan, American Cancer Society Cancer Action Network (ACS CAN). “So data plays an incredibly important role for us, and it helps to shore up the stories and the advocacy work that we’re doing, and then we couple that with patient stories.”

As Sloan explained, ACS CAN’s survey and patient engagement work is dynamic and relies on multiple touchpoints with patient survivor cohorts throughout the year.

“We have a cohort of cancer survivors,” Sloan said, “and we survey them several times a year on a range of policy issues. So we get real-time feedback from cancer patients who have experienced the kinds of policy problems that we’re trying to solve, and they help to influence us and inform us in terms of how our policy solutions might work.”

Especially in the realm of oncology, this approach has kept ACS CAN’s advocacy flexible and responsive. And it is, in many ways, similar to the approach taken by the Arthritis Foundation and other groups.

“Our philosophy for the last few years in particular, has been that we want everything that we do to be led by patient data and patient insights,” said Hyde. “There are three prongs to that. One is qualitative data—the storytelling element. The second is quantitative data, whether that’s via focus groups or listening to patient panels and things like that. And the third piece is vetting all of the information with our patient committees. So there are three legs of the stool, and we really work to make sure that everything that we do is patient-led.”

It is with that methodology that the Arthritis Foundation developed its Ideal Model of Care (IDC), an initiative that aims to identify “challenges patients encounter throughout their health care journey and [develop] solutions to help facilitate patient-centered, holistic health care that is truly a patient’s Ideal Model of Care.”

Similar to the PAN Foundation’s survey, the Arthritis Foundation found that “drugs not covered by insurance” and “high out-of-pocket costs” (issues often caused or exacerbated by unfavorable formulary design, high copays and coinsurance, copay accumulators or maximizers, etc.) were the top two issues reported. “It is interesting to see across different organizations when the data is validated like this,” stated Hyde. Issues around care coordination were another choke point brought up in both the PAN and Arthritis Foundation surveys.

“We knew this from general conversations with patients, but it provided us some concrete data on the importance and the need for better care coordination for patients,” said Hyde. “We had patients telling us: ‘I need my providers to be talking to each other because I feel like I am often an island trying to connect bridges to other islands. One is my endocrinologist, one is my orthopedist, one is my rheumatologist, etc.—and none of them are talking to each other. And therefore, I feel like I’m in this terrible bind.’ ”

Better together

Even as each organization is committed to the collection of data in their own disease realm, they all agreed that shared data sets are a game-changer when it comes to advocacy.

“It’s good to be able to look across all of the data points that different patient groups have collected and pull out some of the most compelling—or ones that just show the breadth of need,” said Hyde. “And for me personally, when I’m in meetings talking about this issue, I often prefer to use other group’s data points—because some of them are more compelling than some of the ones that I have, but it also shows the scope of the issue itself.”

“We welcome receiving and listening to data from other organizations, whether they be disease-specific or disease-agnostic,” said Niles, noting that copay accumulators as just one example of a disease-agnostic issue. “The polling that we do is disease agnostic and can be leveraged by an individual patient, provider groups, and members of coalitions.”

As the panel demonstrated, data and patient stories are powerful, and when patient advocacy groups and coalitions work together, this information can be nearly unstoppable.