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Heidi & Tamar: Two Decades of Patient Advocacy, Innovation, and Leadership

In 2026, Rx4good SVPs Heidi Adams and Tamar Sekayan are celebrating their ten-year anniversary with the company. We asked them to reflect on the evolving world of patient advocacy and its effects on their work (and on them!). We will be sharing Heidi’s and Tamar’s thoughts throughout the year.

Today’s subject is Patient Impact:

Over the past decade at Rx4good, you’ve helped bridge the gap between scientific innovation and real-world patient experiences. What is one specific project or patient story that truly shaped your understanding of patient-centricity?

HEIDI ADAMS, Senior Vice President and Chief Patient Advocate

One story, to me, perfectly exemplifies having a literal blind spot around how to reach and engage with patients, and how badly things can go off the rails without patient input. 

A client with an innovative therapy for a rare eye disease had asked their CRO to build a clinical trial website. The CRO pulled a template off the shelf and built out a nicely designed site, all light blues and grays, all necessary information included. 

We took a look at the new site and said, “Only one problem—none of the patients will be able to SEE it.” 

Patients with this condition need online content to be high-contrast, oversized white text dropped out on a black background, with red as the only viable accent color. The company could have inadvertently (paid a lot of money for and) launched a trial site that would have been virtually invisible to the very people they were trying to reach. Not only would it have been ineffective, it would have sent a terrible message about their respect for and understanding of these patients’ needs and challenges.

Taking the exact opposite approach, another client who was tasked with launching the company’s advocacy function took a patient-centric approach right out of the gate, knowing they were entering a space where pharma had historically disappointed advocates. They had us conduct research asking advocacy leaders, “What are your experiences with and expectations of pharma? What does a good partner look like to you?” The principles developed from that research informed an enterprise-wide engagement strategy that has turned them into a valued member of the community. They have included patients and caregivers at every step of drug development, informing clinical trial design and education, patient support services, site staff support, provider education, and patient-facing materials—all the way to and beyond approval.

And on a small but incredibly human note, I remember after I first started at Rx4good watching my colleagues plan an in-person ad board for Parkinson’s patients down to the tiniest detail: ensuring travel companions would be included in travel reimbursement, scheduling a late morning start to allow time for medications to kick in, and planning carefully considered menus of easy-to-handle foods. This is patient-centricity manifesting in the details— critical to ensuring people who might not otherwise participate are able to contribute and have their voices heard.

TAMAR SEKAYAN, Senior Vice President

One of the most important lessons I’ve learned is that without true patient-centricity, even the most well-intentioned innovations can struggle to succeed; conversely, when patients are meaningfully involved, the impact can be powerful.

Early on, I worked with a digital health company that was deeply committed to empowering patients with access to their health information. The intent was absolutely right. However, adoption proved challenging because patients and the broader support ecosystem around them weren’t meaningfully engaged in the development and rollout. Patient-centricity isn’t just about designing  for patients, it’s about building with them, and with the advocacy organizations that are on the front lines supporting patients and families every day. Without that collaboration, even strong ideas can fall short in real-world use.

On the flip side, a client that was in a highly competitive therapeutic area took a step back to truly understand where unmet patient needs existed. They validated those insights directly with a council of patients and care partners and were able to expand clinical trial efforts to be more inclusive of a sub-population that was traditionally excluded from participation. They could have stopped there. They went a step further, however, and partnered with patients, advocates, and alliances to co-create meaningful resources that didn’t exist for that population, addressing critical information gaps and establishing spaces for patients to connect and support one another. In doing so, they helped raise the standard for what it means to serve the full patient community.

Those experiences reinforced for me that showing up to make a difference takes real work: a willingness to build real relationships, to hear positive and difficult feedback alike, and then to act on it.

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