Patient Experiences and Challenges: Now and Moving Forward

Even before the COVID-19 pandemic, patients faced a complex healthcare landscape that required them to be nimble to maximize their access to quality care. This ever-shifting terrain means people need to familiarize themselves not only with their clinical needs, but also aspects such as digital health, artificial intelligence and machine learning, and financial health.

“So many different responsibilities are placed upon patients to navigate,” said patient advocate Jen Horonjeff, PhD, founder and CEO of Savvy Cooperative. “It puts the burden on the patient, and then patients get called noncompliant when they can’t keep up.”

“It really creates a large load for patients,” explained Horonjeff, also a HIMSS Digital Changemaker Community Member who’s a lifelong autoimmune disease patient and a brain tumor survivor. “For people who don’t have the same health literacy or knowledge, it just becomes that much more challenging.”

Horonjeff outlined some of the experiences and struggles in these three realms and ways to move forward.

Digital Health

Despite her many years of chronic illness, Horonjeff had never utilized telehealth until the start of the pandemic. Her sudden interest in the digital health option mirrored many others experiences, which has seen virtual encounters increase as much as 300% at some organizations.

Like Horonjeff, others may find telehealth easier to utilize than conventional visits.

“People really appreciate not having to travel or take time off to get to an appointment,” she said. “I was sitting at my desk doing other work until my provider showed up on screen. It took all of 15 minutes, and then I went right back to work.”

While future virtual health and digital access will vary widely, a survey on consumer telehealth trends by Accelerate Health found that willingness to use, and even a preference for, telehealth inversely correlates with age. However, it’s possible that with early exposure of Generation Z and Millennials to telehealth, their preference for telehealth will be reinforced as they grow and begin utilizing more healthcare. And Horonjeff hopes providers will be able to balance flexibility to maintain telehealth with an understanding that in-person visits are sometimes preferred.

“Something I digested after my telehealth visit with my rheumatologist was that it was really sad,” she recalled. “I kind of mourned the loss of connection with my provider in person. It was completely separate from how smoothly an appointment can go from the tech side.”

As digital health advances and telehealth continues to become more mainstream, it will be important not to lose our sense of empathy. Empathy in healthcare has been shown to have strong positive effects on health outcomes and patient satisfaction, and can help bridge a patient’s desire to feel understood and cared for.

Explore the Current and Future State of Healthcare

AI and Machine Learning

Many people don’t fully understand the relevance of artificial intelligence and machine learning to their current or future care, Horonjeff said. On the industry side, however, a heavy drive toward precision health in recent years has been fueled largely by big data captured by these tools. Predictive analytics are helping providers not only move away from one-size-fits-all treatments, but also generating key insights into individual health risks.

More people are aware—and deeply concerned—that issues surrounding data access and ownership can compromise their privacy, according to Horonjeff. She spoke with one patient who, she shared, “doesn’t engage in online support groups because they don’t want their data out there.”

People may also be confused about who gets to use their health data when, for example, an app they use gets sold to another company that may use their personal information for a different purpose. “How does a patient get to decide who has access to their data?” Horonjeff asked.

But providers that, leverage AI and data to drive a more personalized approach will need to provide education on how these tools can help tailor and improve their care, she emphasized.

“It comes back to transparency and information,” she said. “This is a theme whenever we think about how clinicians should communicate with patients. People want to feel empowered and informed to make decisions better, and they’d like to have these conversations.”   

Financial Health

Transparency is also vital when it comes to discussing the cost of care—an uncomfortable but necessary issue that’s often top-of-mind but goes undiscussed, Horonjeff said.

“You can’t have a conversation around healthcare in the United States without it coming back to cost,” Horonjeff said. “Patients are battling this on a daily basis. Some are being forced into care that’s not what their doctor has prescribed; it’s what their health insurer says they have to do. They’re getting discordant messages.”

But since providers are aware that costs can present a barrier to better patient experience, many do take the initiative to proactively raise the issue.

“The key here is to be working collaboratively and co-design the future better,” Horonjeff said. “What works best for patients is when the whole system works more smoothly. That means including patients in the dialogue.”