Being a patient doesn’t make you a healthcare expert.
But, more and more, people are having to make complex decisions about their health insurance and their medical care.
That’s why New Jersey healthcare analysts and policymakers are looking to create online tools that will help medical consumers get the maximum possible benefit for a given price or specific need.
Tom Baker, a health law professor and insurance expert with the University of Pennsylvania, helped a broad swath of state health policy experts think through the major issues facing New Jersey patients at a recent conference, “Powerful or Powerless, Consumer Choice in Healthcare,” held by the New Jersey Health Care Quality Institute.
Baker said society has shifted from a model in which patients’ healthcare was in their doctors’ hands to one in which there’s broad agreement that patients should be making these choices.
This is reflected in broader changes across the country and in different industries, , such as the move in retirement benefits away from pensions, which gave workers guaranteed future payments, to employer-sponsored savings accounts, in which the onus was on workers to save.
“We’re going to place responsibility on individuals so that they can manage their own safety net,” Baker said, describing the philosophy behind these changes.
In healthcare, a key example of individual choice is the insurance marketplaces, also known as “exchanges,” in which consumers pick from one of several plans.
While some employers have used private exchanges for several years, the most prominent example in New Jersey is now the federally operated insurance marketplace, healthcare.gov, which was launched under the Affordable Care Act to cover individuals and families.
Baker said insurance exchanges are intended to foster competition among health plans, leading to higher quality coverage at lower prices, and to match individuals with plans that best meet their needs. There are similar choices when selecting doctors or treatments, he said.
But Baker and other experts question whether consumers are given the right information to make these choices. For example, there can be so many options and data sources available that consumers suffer from “information overload,” leaving them unable to make choices with any confidence.
What’s more, the information that is available (or is marketed to consumers) may not be what will best serve them.
Baker pointed to the example of a hospital that advertised the view from its windows.
“We have a responsibility to set things up so that people make the right choices,” he said.
An emerging issue on the federal marketplace and other exchanges is the growing reliance on riskier plans that offer low monthly premiums but high out-of-pocket costs. Later, when patients are faced with costs they can’t afford, some forgo needed medications or doctor visits, Baker said.
Baker is working to develop software tools that patients can consult when they have to choose between health plans.
But he also pointed to a very traditional source that’s been serving patients well – insurance brokers, who he called the “silent heroes” in implementing the ACA.
Baker said health policy experts should also work to ensure that those brokers have good tools available to them, with up-to-date and pertinent data enabling them to distinguish one plan from another.
Katherine Hempstead, director of health insurance coverage for the Plainsboro-based Robert Wood Johnson Foundation, noted that researchers are still trying to determine basic facts about how insurance exchanges can best serve patients, such as how many plans should be available to choose from.
This can be even more complicated for people who want to find a healthcare provider, since much of the information that’s available online or from insurers is inadequate or outdated. The foundation has funded efforts to improve the information available to consumers about insurers’ networks of healthcare providers.
Baker noted that government-sponsored exchanges can shy away from giving certain information that would allow consumers to rank their coverage options, since insurers object to the possibility of receiving low rankings.
Suzanne M. Miller, a psychologist with Fox Chase Cancer Center in Philadelphia, cited other obstacles to helping patients make informed choices.
Patients are “often asked to make healthcare decisions under circumstances in which they feel most vulnerable, where they’re most confused, where they’re facing the most unfamiliar situations, where everything is uncertain,” she said.
Miller suggested that as healthcare systems moves toward “personalized medicine” tailored to each patient’s genetic risks, they also take into account each individual’s personality and decision-making style.
She said some patients scrutinize every detail of their health and the services they receive, while others tune out all but the most essential information. Providers should help the first group, described by Miller as “monitors,” to focus on what’s important to their health.
Miller added that providers have had success in helping patients decide what treatments to pursue by asking them to “pre-live” different scenarios, imagining different possible outcomes.
She also noted that the online tools that patients say they want can differ from what patients would actually use.
Miller cautioned everyone who’s looking at data tools to keep in mind that patients make their healthcare decisions in the context of their relationship with their doctors.
The nature of that relationship is crucial in determining whether patients understand the decision-making tools available to them, she said.
“We really need to understand what it is that patients really want and how they themselves interact with these tools,” Miller said. “We build them, but they don’t necessarily come, they don’t necessarily use them the way we think they are using them.”
Some audience members offered their personal perspective on the challenges facing patients when they make healthcare decisions.
Mark Rucci, acting co-president of East Brunswick-based provider network Partners in Care, questioned whether social changes are driving the move to insurance exchanges. He added that employers are looking to private insurance exchanges as a way to keep their costs down.
“It really comes down to finances,” he said.
Greg Paulson, deputy director of the Trenton Health Team, pointed out that healthcare choices are more complicated for people who don’t have stable housing situations or face violence in their homes.