Amid the COVID-19 pandemic, patient community leader Wego Health held a Zoom conference with chronic and rare disease patient leaders to discuss how pharma and healthcare can improve the patient experience. Among the key takeaways was a sense that, although patients can be grouped by their illnesses, they remain unique individuals with different backgrounds, histories and needs. 

“There are a number of types of bipolar disorder,” said Bipolar Battle blog writer John Poehler. “Often when people are diagnosed, doctors are so busy they don’t fully explain that, and pass the job of clarifying things onto the next healthcare professional, thinking maybe they will help.”

It’s this occasional failure to treat patients like people that has empowered Poehler and his peers to create their own networks, which have since grown into vast communities. While this in and of itself is a good thing, leaders of these communities would prefer enhanced collaboration between patient leaders and pharma.

They’d like to be part of a symbiotic relationship that offered pharma insight into what patients needed and gave patients much-needed support. By way of example, while some pharma organizations have nurses on staff to answer general questions, oftentimes patients aren’t aware of it.

“Maybe they didn’t read their product pamphlets,” mused Lung Cancer Support Community founder Katie Brown. “Maybe they were just upset by the fact that they were diagnosed and starting a new treatment. But when patients today feel lost, they call advocacy organizations and ask us for assistance.”

MS advocate and blogger Ashley Ringstaff agreed, adding, “One of the biggest things I hear every time a release from a pharmaceutical comes out is that it isn’t written in a way anyone can understand. Especially for someone newly diagnosed who has no experience with the industry, it’s all just a bunch of gibberish.”

The patient advocates participating in the event stressed the importance of clear and understandable messaging. To that end, they posed a handful of questions: If you want to know if your writing is clear and understandable, who better to ask than the people you’re trying to reach? And what about sharing messaging with a select number of patients willing to help ensure the language resonates prior to publication?

As for addressing these concerns amid the COVID-19 pandemic, the e-panelists noted the havoc it has wreaked on the healthcare system and confusion it has sown among patient populations. That’s why they feel so strongly that pharma should avail itself of the opportunity to work alongside advocates on the creation of campaigns designed to highlight their efforts.

“Our communities are coming together across disease spaces to unite,” said patient advocate and cofounder/CEO of People with Empathy Christine VonRaesfeld. “What I’d like to see from pharma is a united statement saying, ‘We care about you and we want you to get your meds, and here’s our contact information.’ But instead of that, I’m getting 500 different emails from different pharma companies saying, ‘Look how great we are!’ I’m not seeing anyone working together.”

Poehler added that pharma needs to highlight its financial support programs, while Brown called on the industry to connect with groups like hers about information around access programs or scholarships. “We’re the information clearinghouse for patients,” she added.

As VonRaesfeld put it: “Why not work together to make things happen and build trust? Once a patient trusts you and knows you’re going to help them, they will do anything for you.”