Patients and the Pandemic: How social distancing has affected rare disease patients

The adage, “Necessity is the mother of invention,” has never been truer than in 2020, when virtually the entire world was forced to move their lives online. Business, education, entertainment and medicine all had to quickly find ways to continue working, teaching, connecting and healing, at a safe and secluded distance. Telehealth, previously a nominally adopted form of healthcare, has risen exponentially during COVID, with a McKinsey & Co. report estimating physicians saw between 50-175 times more patients via telehealth than they did prior to the pandemic.

For those suffering from a rare disease, the widespread adoption of inadvertent social distancing tools such as telehealth and the now ubiquitous Zoom have proven to be an unexpected blessing. Those afflicted with a rare disease are typically immunocompromised, which requires them to live the majority of their lives socially distancing for fear of catching even the most minor of germs and growing even sicker. The ability to see their doctors without leaving the house has resulted in many patients taking a more proactive role in their healthcare.

Karin Waldman, EVP managing director, Patients & Purpose and Oliver Portmann, VP communications, Snow Companies, both of whom are part of Rare Collective — a group of rare disease thought leaders — say the rise of telemedicine has bolstered patient adherence and involvement.

“Our patients have been reaching out to their doctor sooner when small things come up, whereas before they wouldn’t have addressed them because they didn’t want to have to travel and sit in a waiting room,” explained Waldman. “Telemedicine enables patients to have a more proactive relationship with their doctor, which leads to flagging issues earlier which tends to result in better outcomes from treatment.”

For Susan Abedi, EVP, commercial solutions at 81qd — an advanced healthcare data analytics company made up of data scientists, medical strategists and marketing professionals who use a proprietary algorithm to identify undiagnosed patients — the fact that in-person visits have declined, in particular preventative visits, is concerning. Rare disease patients tend to visit doctors frequently in their long journey toward finding a diagnosis and their inability to search out new expert advice in the time of COVID could have adverse ramifications for patients and doctors alike.

“There is going to be a real gap in the diagnosis journey this year,” said Abedi. “I’ve heard of patients who have stopped their treatment and/or aren’t visiting their doctors as frequently and that’s worrisome. For pharma, who rely on building strong relationships with doctors, going virtual makes it much more difficult. If you want to talk to a physician about an undiagnosed patient, you need to go there and say, ‘I know you’re working on this area and may have a patient that looks like XYZ, which could be an obscure, rare disease.’ It’s easy to have that kind of conversation in person. It’s much more difficult in a world of telehealth and virtual conversations.”

Get yourself connected

Telemedicine, by its very nature, can be largely theoretical. A good analogy is to imagine learning to cook without being able to touch, taste and smell the food. Seeing a patient’s body, feeling it and reading their body language is what some call the “artistic” aspect of healthcare.

“You have to look at my skin to see if I have a rash and to feel it to make a real diagnosis,” Abedi said by way of example. “Maybe you can see that it’s connected to my shoulder but you can’t see that on a screen. In person, a doctor can see your toe is tapping nervously and know there’s something you’re not saying which allows them gently nudge and ask, ‘So what else is going on?’”

For Kristin Morris, VP, Creative Director at Dudnyk (a member of Fishawack Health), these kinds of gaps offer opportunities for tech companies to push harder towards solutions that conform to our new environment.

“The pandemic has forced us to face the limitations that a virtual environment puts on diagnostic and monitoring technology that most specialists take for granted,” she said. “Tech companies have the chance to create new ways to identify and treat rare- disease patients without doctors having to see them in their offices.”

As for marketers looking to reach rare disease patients amid COVID, the same rules of authenticity apply, just to a greater degree. “Now that we’re getting the logistics down, we need to shift our focus to the connection,” said Morris. “Even in a normal world, engagement in rare disease requires more authenticity than what you find in traditional selling strategies. These communities will not trust a brand who isn’t showing them a real reflection of the challenges they face.”

She goes on to explain that the first best practice for any interaction with rare disease patients is to learn as much as you can about their unique situation; you must now be willing to learn it all over again through the lens of a massive, world-altering pandemic.

A recent survey led by Rare Collective found that 46% of rare disease patients sought even more video conferencing, online resources and avenues to connect with other patients. While Rare Collective has moved nearly all of its programming online, it has also been finding unique ways to hold responsibly distanced, smaller in-person meetings, the most innovative of these occurring on four wheels.

“Our video team acquired an RV so that they can do video shoots at, or near, a patient’s home,” said Portmann. “This way patients don’t have to go anywhere and can still safely execute meaningful content creation.”

And yet another avenue for reaching patients is marketing through electronic medical records.

“This is a great way to market to patients that hasn’t yet been fully realized,” said Waldman. “That could be anything from pop-ups on their phones that recommend recipes for their certain diseases, to medical facts, to tips for talking to their GP and, perhaps most importantly, stories from influencers — people they may follow who can speak, personally, to their experiences. The empathy part of marketing for RD patients is not to be underestimated.”

Both Waldman and Portmann note that rare-disease patients have lived their entire lives socially distancing and admit that “They’ve actually been the ones teaching us how to do it.”

Before and after

We have a long way to go until the pandemic is under control, until there’s a vaccine for everyone and until our lives return to whatever our new normal looks like. The “mother of invention,” continues to be necessary to our survival and especially to the survival of those already at risk. Pharma, physicians, patients and tech innovators need to keep improving the qualitative nature of telehealth, finding ways to reach rare disease patients who have long lived in a purgatorial state of unknown.

“Knowledge is power,” notes Morris. “We must continue to invest in these rare disease communities, no matter how small they are. The hope is that we not treat this tele-revolution as a down-and-dirty fix to a temporary problem, but rather pay attention to what is serving us well and hold onto that.”

“If telemedicine can help reduce a patient’s bouncing around, hopefully that will shorten their journey,” said Abedi. “The question is, can it support these discussions better?”

Added Morris, “This is an opportunity for all of us to truly live a patient-centric mission, leading patients to solutions that can benefit their lives which were already rocked by their initial diagnosis. This pandemic marked yet another fault line — a before and after.” She adds, “We help by showing them there is hope in the after.”

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