Patients Engaged as Consumers
Patient engagement is a hot topic. From next week’s HIMSS Conference and Exhibition to the current issue of Health Affairs, the Office of the National Coordinator for Health IT, and most healthcare organizations, patient engagement is prominently on the agenda. In Forbes, quality and safety guru Michael Millenson reports that the patient engagement movement has entered a new, high-powered phase. Those now joining the bandwagon include organizations, companies, and government officials willing to devote “money and power…cash and clout” to support efforts to engage patients in their own health and medical care in “this putative new paradigm.”
I expect we’ll continue for some time in this early period, with limited numbers of explorers and early adopters—patients and providers—of these new “engaged” and participatory relationships laying the groundwork for future societal changes. It’s an exciting time, and I believe these changes are inevitable and beneficial.
One aspect of patient engagement, which I’ll call financial literacy, is just beginning to receive the attention it should. Financial literacy is the ability of an individual to understand the financial implications of healthcare choices. In the United States, we tend to be financially illiterate in our healthcare choices because we lack information and experience.
Since the introduction of widespread employer-based healthcare and, more recently, government entitlements (Medicare and Medicaid), patients and families have been protected from knowing about the cost of healthcare, especially related to choices among options for testing, diagnosis, and treatment of disease. Even the cost of coverage—health insurance—is disguised as a “benefit,” representing compensation that doesn’t appear in our pockets nor on our W2 forms.
Patients aren’t the only ones in the dark. Physicians often don’t know what the testing and treatments they order will cost the patients who receive them. Engaged patients who do “shop around,” trying to find out ahead of time what something will cost, discover that prices are often not available, vary widely, and may depend on what if any insurance coverage they have. A study published in JAMA Internal Medicine in February confirms that prices vary widely for a given procedure (total hip replacement in the JAMA article), with no clear relationship between cost and quality of service or outcome. Many providers bristle when asked about cost and don’t want to “waste time” talking with patients about the financial implications of care. It’s no wonder most of us are financially illiterate about healthcare.
Many patients find themselves potentially on the hook for thousands of dollars of care each year—through high-deductible health plans—and are encouraged to become more active in and responsible for medical decision-making. At the same time, patients face a dearth of information and support in a crucial, unavoidable aspect of making those decisions—the implications (often serious) for personal finances. Until recently, we’ve been reluctant to think of patients as consumers and have found it unseemly and uncomfortable to acknowledge that cost may be a consideration in choosing care. Increasingly, that attitude is unrealistic and does a disservice especially to patients and families, but arguably to providers as well. Especially now that we recognize the value of more participatory relationships between providers and patients, we have to include financial literacy in everyone’s toolkit. Certainly cost should not be the primary or sole factor in choosing care, but it is irresponsible and immature to leave cost out of the equation. Is there any other good or service we purchase without regard for cost?
Physicians, too, need to have an appreciation for their patients’ financial concerns and the role that cost may play in shared decision-making. For physicians, the role of cost in diagnosis and treatment is complex, as discussed recently by Rosenbaum and Lamas in Cents and Sensitivity: Teaching Physicians to Think about Cost. In their article, they mention Neal Shah, MD, whose organization Costs of Care has been working to “transform American healthcare delivery by empowering patients and their caregivers to deflate medical bills” by becoming financially literate and making smart, responsible choices about medical care.
Three other articles I’ve read recently indicate that what I’m calling financial literacy is becoming a legitimate part of discussions about patient engagement and a hot topic in its own right.
• The first is a recent post by Dave deBronkart, an early success story and evangelist of patient engagement and “participatory medicine.” deBronkart become known online as “e-Patient Dave” following successful cancer treatment in 2007 and is now a speaker and consultant to healthcare organizations. He advocates for “a totally new view of the role of the patient: patient as engaged partner, not passive recipient.” In a recent post on Forbes.com, “The New Excellence: Consumerism Comes to the Medical Market,” deBronkart argues for applying “consumers’ rising awareness of who’s best, what things cost, and their own ability to step up and get engaged” to the medical marketplace.
• As mentioned earlier, the February issue of Health Affairs is devoted to patient engagement and covers many aspects of this trend, including financial implications. One article in particular documents our lack of financial literacy in healthcare. In “Focus Groups Highlight that Many Patients Object to Clinicians’ Focusing on Costs,” Sommers et al. report on what they learned from 22 focus groups comprising 221 individuals from Santa Monica, California, and Washington, DC, who had insurance coverage and represented a range of demographic characteristics. The researchers examined “whether participants were willing to weigh costs when choosing between nearly comparable clinical options, and whether they were willing to accept the less expensive option.” In summary, the researchers identified four areas in which the participants’ ability to make good healthcare decisions was compromised by lack of knowledge, understanding, or experience. Study participants tended to:
- equate the most expensive medical care with the most effective or “best” care,
- lack experience evaluating the financial effects of healthcare decisions (“trade offs between health and money”),
- misunderstand the role of insurers in the healthcare economy, and
- act in self-interest regardless of long-term or societal costs.
• The cover story of the February 20, 2013, issue of Time, “Bitter Pill: Why Medical Costs Are Killing Us,” is the longest article ever published by the magazine. In it, Steven Brill investigates why medical costs are so high in the United States. For the article, he reviewed the hospital bills of seven patients and found that pricing is difficult to decipher and exorbitant. The implications of Brill’s expose for the patient engagement movement are profound. If pricing is capricious and unrealistic, how can engaged patients hope to make rational decisions? According to Brill, they are “powerless buyers in a seller’s market”:
“Unless you are protected by Medicare, the health care market is not a market at all. It’s a crapshoot. People fare differently according to circumstances they can neither control nor predict. They may have no insurance. They may have insurance, but their employer chooses their insurance plan and it may have a payout limit or not cover a drug or treatment they need. They may or may not be old enough to be on Medicare or, given the different standards of the 50 states, be poor enough to be on Medicaid. If they’re not protected by Medicare or they’re protected only partly by private insurance with high co-pays, they have little visibility into pricing, let alone control of it. They have little choice of hospitals or the services they are billed for, even if they somehow know the prices before they get billed for the services. They have no idea what their bills mean, and those who maintain the chargemasters couldn’t explain them if they wanted to. How much of the bills they end up paying may depend on the generosity of the hospital or on whether they happen to get the help of a billing advocate. They have no choice of the drugs that they have to buy or the lab tests or CT scans that they have to get, and they would not know what to do if they did have a choice. They are powerless buyers in a seller’s market where the only sure thing is the profit of the sellers.”