Improving the healthcare consumer experience requires education, advocacy, and systemic change, according to experts who discussed the issue at the 2024 Utah State of Reform Health Policy Conference last month.
Maury Giles, chief growth officer at Heart and Mind Strategies, said his company examined national data from a variety of stakeholder groups—including policymakers, patients, providers, and the engaged public—to examine their views on the healthcare industry. He said there was a common theme across all stakeholders.
“There is a call and a desire for hope that people can get better quality healthcare by those involved showing an intent to put people above profit and lowering costs,” Giles said.
The challenge, Giles said, is figuring out why these issues—profit and costs—are in play.
Ari Bruening, CEO of Envision Utah, said his organization has worked with focus groups to see what “pain points” they have about the healthcare system. Staff spoke with various healthcare stakeholders, including workers, employers, and consumers.
“Affordability, hands down, is the number one [concern],” Bruening said.
Bruening discussed a Healthcare Value Hub report, in which 1,300 Utahns were surveyed about healthcare affordability. He said 63 percent of Utahns delayed or went without healthcare due to cost concerns. That included skipping medical tests, rationing medications, not going to the doctor, and more.
Further “pain points” in the healthcare system included the complexity of dealing with insurance carriers, opaque pricing, wait times, and mental health access, Bruening said.
“Accessing mental health was something that came up a lot. Everything from stigma to just being able to find somebody to see you within a reasonable amount of time. Also just long wait times in general. It’s hard to get in to see people—especially in certain specialties—within a reasonable amount of time.”
— Bruening
Daryl Herrschaft, the director of Take Care Utah at the Utah Health Policy Project, said his organization helps people obtain healthcare coverage, effectively working to improve their consumer experience. Consumers often have to over-educate themselves about the insurance industry when trying to navigate that side of healthcare, he said.
“There really is an incredible amount of onus put on the patient, on the individual, to figure out what they need to do in order to pay for services,” Herrschaft said.
Herrschaft said the demand for Take Care Utah’s access assistance services rose dramatically in the past year due to the Medicaid unwinding. He noted that consumers received a lot of differing information from various entities during the unwinding.
The state would tell consumers one thing—trying to ensure their practices followed the laws—while insurance carriers may have told them something else, Herrschaft said. He said the burden of navigating the discrepancies fell on the consumer.
Consumer education on the healthcare system is important, but it is not feasible for everyone to become an expert on it, Herrschaft said.
Stephanie Burdick, a consumer representative on the Utah Department of Health and Human Services’ Medical Care Advisory Committee, said lack of respect is a major issue within the healthcare system, and it is often overlooked.
“[Respect] could mean a lot of different things to different people, whether it’s that they’re treated differently and that they’re discriminated against, or whether it’s just that there is a disagreement or a lack of clarity. Or a lack of understanding of something the doctor tells you, and then you want to try to resolve it,” Burdick said.
Burdick said there is no shared language between the industry and consumers, which makes it difficult to resolve issues.
Bruening said most of the stakeholders in his focus groups want affordable, accessible, and high-quality care. But patients, in particular, want respectful and empathetic care, and to feel empowered by the care they receive.
Giles said many consumers have negative experiences with the healthcare industry. He discussed a personal scenario in which his son had to receive an emergency surgery that should have been covered by insurance.
Months after the procedure, his son received a $9,643 bill because when the insurance claim was filed, the surgery—an appendectomy—was not coded as an emergency.
Giles said there has been conversation between the insurance company and the provider, with both parties separately ensuring Giles and his son that the problem will be solved. However, he said there have been debt collection threats as the issue remains unsolved.
Burdick became a consumer advocate due to a negative experience she had in the healthcare system. Because she grew up in an area of Arkansas that had poor health metrics, Burdick decided to study public health. But in 2015, she suffered a traumatic brain injury from a surfing accident. While recovering from her injury, she experienced major barriers to accessing care, including loss of housing and insurance. That made her want to become an advocate for others.
Herrschaft said he has also had negative experiences. But due to his job experience, he is able to navigate the system easier than the average consumer.
“I have the advantage of knowing some of how the system works,” Herrschaft said.
Burdick said systemic issues are a major cause of bad consumer experiences and outcomes. She said all consumers must be represented for change to occur.
“I think the economic and political power of our healthcare system breeds corruption. It breeds mistrust. And we don’t talk enough about medical mistrust … We have to have more average people, working people, poor people, [people] from all backgrounds represented in decision making.
We need to elect people that care about us and care about our health, and then we need to tell them to fight for us in those positions they get elected into, and not allow the industry to bully them into forgetting about who sent them to office.”
— Burdick
Burdick discussed the difficult position consumers are in because they often do not have the power to fight against the system. Many people also disengage with the system because their trust in it becomes broken.
Many issues at the consumer level occur because those same issues are ignored in boardrooms and at the policymaking level, Burdick said. Consumers need to start getting involved, and the healthcare industry needs to start listening to them, she added.
Herrschaft said organizations like Take Care Utah struggle under the current system as well. From an insurance point of view, he said the state has no system to help people access coverage, so the responsibility falls on organizations like his.
In 2023, Take Care Utah enrolled 40 percent more consumers in Medicaid and two times as many consumers in Affordable Care Act plans than they enrolled in 2022. Herschaft said they did this working with the same number of staffers they always have. While Take Care Utah receives outside funding, funds are not consistent, much like other community-based organizations.
“There is no system to sustain that work,” Herschaft said. “We always look to community-based organizations and say, ‘Well they’re the ones that will help you.’ But no one is helping us.”
Burdick said fixing the system will not be easy or pleasant, but stressed that health equity happens only when there is self-determination.
“The whole healthcare system suffers whenever we ignore the needs of consumers,” Burdick said. “Consumers should have a say in their lives, and they should absolutely have a say in policymaking. The political power is too often concentrated in hospitals in healthcare.”