Q&A: Elizabeth Johnson Shares Why Empathy Is Missing From Patient-Centered Care

Elizabeth Johnson, LPN, PACS, BPCA, CEO of MedicoCX and co-CEO of Healthcare Advocate Summit, presented at Asembia 2023 about how patient trust in the health care system is in jeopardy and how more patient-centered and empathetic approaches can improve quality of care and provide better insight into the patient experience. The American Journal of Managed Care^® interviewed her while at the conference.

This transcript has been lightly edited for clarity and conciseness.

How can empathy play a role in drug development, marketing, and delivery, and why is it considered the missing link in health care?

Johnson: I think understanding empathy vs sympathy is a really big deal. Empathy is what we want to strive for; we want to make people feel comfortable. But I think we need to hire and bring in the right people to deliver that.

I was talking about this earlier with someone: When you see an ad for mental health, it's always somebody with a hoodie pulled up over their head looking really sad. And sure, that catches your attention, but that's not always what depression looks like. I think to really hone in on empathy, we need to be empathetic to these disease states and what's going on and appeal to the masses in a way that's appropriate for all. I personally don't like the cancer patients singing and dancing, walking down the beach with their hair blowing in the wind. That's not really what they're going through. We need to portray it from both sides, right? Both the positive and the negative.

What are the potential consequences of a lack of empathy in drug development, marketing, and delivery, and how can it impact patient outcomes and trust in the health care system?

Johnson: With patients having access to social media—you've got TikTok, Instagram, and all of that—there's so much information out there and there's so much that a patient can digest quickly. But the empathetic part, the part that matters, is really where the dollars are going to come in, because when a patient is prescribed a new medication, the first thing they do is hit Google or social media looking for that. And that can lead to script abandonment if they're scared by what they find or what they see. So, making sure that they have something that is sensitive to all walks of life, while still being relevant and appropriate is really what needs to happen.

How can patient-centered approaches and empathetic communication positively influence patient engagement, adherence, and satisfaction in the context of health care?

Johnson: First, we have to take true patient-centric approaches and really let the patients speak and put them first. Right now, that's really hard to find. When you watch a commercial, it'll say "actual patient" or "not actual patient," so we're not appropriately displaying the patient's perspective. By having that and by supporting that, good or bad, if a medication didn't work for a patient, that's okay because what that then shows is the patient went back to their provider, communicated something didn't work, and then went on to something else.

So, I think highlighting both the positive "Hey, this worked for me, I'm better," but also, "I communicated with my provider," that shows a real patient-centric health care focus from both the manufacturer standpoint and the provider standpoint.

What are some practical approaches that can be employed to ensure that patient preferences, values, and perspectives are considered in drug development and delivery, and how can empathy be integrated into these processes?

Johnson: The number one thing is bring the patient in. Have the patient involved from the very beginning. In research and development, that's tough, but start asking the patient "If our outcomes are this, what does that look like to you? How does that make you feel?" And continue that through the journey. Advisory boards are a great way to bring patients in at multiple steps throughout the process and get their thoughts and opinions on what is being developed. I think that empathy component patients will feel attached to the product or to the brand. And then, word of mouth spreads from there. If one patient feels comfortable, another patient will go to them and then lots of patients—it trickles down. So, yes, bring them in early.

What are some real-world examples of successful integration of empathy-building strategies in drug development, marketing, and delivery, and what lessons can be learned from these experiences?

Johnson: My favorite is YouTube and social media. For years I followed this patient [with spinal muscular atrophy], Squirmy [Shane Burcaw]—that's what he goes by—Squirmy and Grubs. It's him and his wife [Hannah Aylward]. They've partnered [with Genentech] for one of [the company's] products. They do a phenomenal job highlighting the challenges of the disease state but also the support of the manufacturer and what that does for them.

They make it relatable. There are daily "what's going on," "getting ready with us," and "what challenges we face traveling," videos. I think that's probably my best example of where research and development partnerships between patients and a manufacturer have been shown. I like being able to see real people doing real things, and a manufacturer backing that up because that's where their best outcomes lie.

What are the ethical considerations related to empathy in health care, including issues such as cultural sensitivity, diversity, and inclusion, and how can they be addressed in drug development, marketing, and delivery?

Johnson: Right now, we as a health care organization, just in general look at equity and diversity as almost checkboxes. Do you have someone from this ethnic background? Do you have someone from this socioeconomic category? Really, the top problem with all of this is people are afraid to have the conversation. If I have a patient of a different race ask me a question, I may not know the answer, but I can't be squeamish or shy to say, "I know of an organization that can do that." Right? "I may not be of the same race, but I know someone who is. Let me connect you."

So, instead of it being weird or awkward, we really need to embrace that diversity and we need to make better connections out there. So yeah, when a patient comes to me and has a question—[an example is that] in the African American population, asthma affects more individuals—and I can't relate, but I know an organization that can, I have no problem saying, "You can get your information from them because they're more qualified than I am." I have no problem saying that to support that patient. And so, I think we need to stop making it awkward. We need to stop making it a buzzword, because yes, equity, diversity, we know all this—let's just actually make real relationships out of it.

How can collaborative efforts among patients, health care providers, industry representatives, policymakers, and other stakeholders be fostered to create a health care ecosystem that values trust and empathy in drug development and delivery?

Johnson: I think we need to go beyond the "patient is first" mentality and actually put the patient first and then show relationships beyond the patient. Maybe it's the patient and their financial navigator, the patient and their biologics, coordinator, or nurse, or pharmacist, or whatever else you want to put between the provider and the patient. All of those roles are so essential in showing this relationship. It's almost like a pyramid. We put the patient first, the support staff second, then we've got our providers, and then we've got our manufacturers and pharmaceutical companies, and we show that without one you don't have the other right. We connect them all together to really show what that collaboration looks like.