3 ways to guide rare-disease patients to the specialized care they need

3 ways to guide rare-disease patients to the specialized care they need

Patients with less common conditions can face numerous care challenges. From finding an appropriate specialist to accessing relevant resources and affording a treatment regimen, how can the industry help connect these patients to the care they need?

Managing and treating any disease or chronic condition can be difficult, but patients with less common conditions often face a range of additional care hurdles. It’s frequently more difficult for these patients and their caregivers to find the right specialist, access relevant resources or afford a treatment regimen, all of which can negatively impact their health outcomes. So how can you connect these patients to the care they need? 

In a panel discussion at the 2024 DTC National Conference, biopharma and media industry leaders shared their strategies for supporting rare-disease patients along their healthcare journey. Alexandra Beneville, Vice President of Content Strategy at Phreesia, kicked off the discussion by noting how challenging it can be to effectively reach these patients.  

“I think one of the most important things to start with is really understanding their experiences,” Beneville said. “What are the hurdles that they are facing that limit and delay their diagnosis, their access to care and even their own behavior?”  

Here are the panelists’ top three suggestions for overcoming those hurdles. 

1. Engage advocacy groups to expand reach 

One challenge that patients with rare diseases in particular often face is a lack of access to other people with their condition. That isolation makes them vulnerable to a concept known as “satisficing”—a term that refers to settling for adequate options rather than spending time and energy searching for the best options, said Katrina Gary, Senior Director of Patient Marketing and Engagement at argenx.  

“Over time, patients just get resigned to their condition, and the bar gets lower and lower,” Gary explained. “They go for years without seeing someone who feels like them and understands them.” 

Patient advocacy groups can mitigate that challenge by providing critical support and reliable information about new therapies to patients with rare diseases. Many advocacy groups also have integrated advanced tools into their websites that can help patients find the right specialist care and additional resources to help them better manage their condition. 

Working with patient advocacy groups to create content that is tailored to support rare-disease patients throughout their care journey is key. Such partnerships “are about building trust with the patient community,” Gary said. “They are living the experience. It is imperative to connect in an authentic, meaningful way.” 

2. Leverage the specificity of digital platforms 

Getting your message out to very small patient populations is tricky, the panelists agreed, but a growing array of digital tools is easing the process of delivering ultra-specific services and messages to patients.  

“No two patient journeys are the same,” said Jennifer Anderson, Director of Hereditary Angioedema (HAE) Innovation and Operations at Takeda. A patient with HAE in a rural setting who is treated primarily by their internist is unfortunately likely to have a different experience than a patient in a big city with easy access to specialists, she explained, adding that Takeda leverages data and insights to determine where each patient is in the care spectrum so its content can be tailored accordingly.  

Those digital capabilities make it easier for patients to connect with physicians who specialize in treating their rare disease in many ways, from embedding doctor-finder tools into brand or condition websites to providing transportation to patients who need help getting to their specialist’s office, the panelists shared. 

Other options, such as television streaming services, mobile apps and tailored point-of-care messaging, also can be effective. In addition, keyword research can be used to plan content strategies based on the exact information rare-disease patients seek. 

Mark Pappas, Executive Vice President of Innovation at CMI Media Group, added that audio and gaming channels also can be particularly effective in reaching small patient groups.  

“There’s a podcast for everything,” Pappas said. “Even if a podcast that’s dedicated to a rare disease only draws a few hundred listeners, those people are very engaged and drawn into the content.” 

3. Integrate the caregiver journey 

In the world of rare diseases, engaging with patients’ caregivers is as important as reaching patients themselves, the panelists emphasized.  

“Caregivers play a tremendous role throughout the patient journey,” said Jo Zmood, Managing Director at OMD USA. “Often, they accompany the patient on their health journey, in the physician’s office, or through specific sites and communities. However, they are an audience in themselves that also needs to be recognized for their role, emotional state and experiences along this journey.”  

Zmood added that the industry is ideally positioned to provide the right content to caregivers at moments that matter.  

“Sometimes it’s as simple as recognizing caregiver pain points and exploring ways to help mitigate those obstacles,” she said. 

Thanks to advances in technology, it’s becoming easier to support patients with rare diseases by delivering personalized content to them when and where they need it. A patient with a rare disease might know how to manage their condition after living with it for years, or they might be experiencing changes in their condition that are changing their life, Beneville said, adding, “We need to meet them at each of those moments.” 

Find out how Phreesia can help you make care easier every day for patients with a rare disease by empowering them to be active participants at every stage of their healthcare journey.