Price Transparency and Patient Empowerment

Abstract

Health care price transparency tools have proliferated across the United States in recent years. While these tools are primarily intended to help control rising healthcare costs, they are also frequently described as empowering patients by providing the financial information needed to make more fully informed decisions about medical care. If these tools do empower patients, then the money and time invested in developing and maintaining them could plausibly be justified even if price transparency proves largely ineffective at cost-containment. Using Nancy Kass’s public health ethics framework, I explore whether price transparency can rightly be seen as achieving the aim of empowering patients. In examining this issue, I distinguish between what I call passive price transparency initiatives (where the information is made available for patients to find, should they choose to look for it) from active price transparency initiatives (where information about costs is given directly to patients). Most existing price transparency initiatives are passive, and I argue that these programs, rather than empowering patients, instead risk increasing patient burdens in a way that is most significant for those who are already worse off. Only active price transparency (in other words, price disclosure) can be seen as empowering patients in a fair and not overly burdensome way.

Introduction

In the ongoing effort to control healthcare costs in the United States, price transparency has been touted as one promising solution, and recent federal laws have been put in place to increase transparency for health pricing nationwide. Given the widespread investment in price transparency tools throughout the country, it is worth examining whether these investments are well spent. Much of the debate surrounding price transparency has largely focused on its likely effectiveness for reducing costs. Where more explicitly ethical issues are addressed, it is usually to claim that these programs have the additional benefit of empowering patients. Thus, while cost containment may be the primary aim of price transparency, patient empowerment can be seen as a second and distinct aim, which could theoretically justify the use of price transparency even if it proves ineffective at controlling costs.

This paper aims to address a gap in the literature by providing an ethical analysis of price transparency. Using Nancy Kass’s public health ethics framework [1], I explore whether price transparency can rightly be seen as achieving the aim of empowering patients. In examining this issue, I distinguish between what I call passive price transparency initiatives (such as websites listing standard charges for common procedures and app-based cost calculators), where pricing information is made available for patients to find, from active price transparency initiatives (where information about costs is given directly to patients). Most existing price transparency initiatives are passive, and I argue that these programs, rather than empowering patients, instead risk increasing patient burdens in a way that is most significant for those who are already worse off. Only active price transparency (in other words, price disclosure) can be seen as empowering patients in a fair and not overly burdensome way.

Kass’s Ethics Framework for Public Health

The cost of health care in the United States is not strictly an economic (as well as political) issue but is also a public health concern. High (and often uncertain) costs can lead patients to delay or avoid care altogether, leading to worse health outcomes [2–8]. Among patients, these financial burdens are not evenly distributed. For those with generous coverage or adequate financial reserves, the cost of health care may be manageable, but for those with more limited resources and who are uninsured or underinsured, the burdens and harms of healthcare costs can be significant [8, 9], and this is even more true for those who have multiple chronic illnesses. Given these facts, it may seem that anything that would help patients better plan for treatment costs and identify more affordable care would be beneficial. However, increased price transparency has potential downsides, as well. Once they learn the cost of care, for instance, some patients may choose to forgo recommended treatments. In addition, as can be seen by the sheer breadth and variety of price transparency laws and tools in the US, a large amount of time, effort, and money goes into developing and sustaining these initiatives. Price transparency, then, has the potential for both significant benefits and burdens.

Because of the public health impact of healthcare costs, as well as the mix of potential benefits and burdens from price transparency, Nancy Kass’s ethics framework for public health provides a useful lens for examining the ethics of these initiatives. Kass developed a six-step framework for examining the ethics of policies and programs related to public health. In this framework, we must first ascertain the goals and effectiveness of the initiative or program, then examine the burdens (whether already known or potential) the initiative creates and whether these burdens can be minimized, and then finally explore the fairness of the initiative in terms of how it is implemented and whether the benefits and burdens are fairly balanced [1].

To apply this framework to price transparency, then, we must first consider the aims of these various initiatives. Discussions of price transparency tend to describe two main aims of these programs. While the primary aim is controlling costs, it is also often portrayed as having the additional benefit of empowering healthcare consumers1. These two aims are importantly related, as the first is widely held to be achieved through the second: empowering patients with better access to pricing information, the thinking goes, should encourage them to choose more affordable care, thus placing downward pressure on the healthcare market. These two aims can come apart, however, so that even if price transparency proves largely ineffective for controlling costs2, it could still be justified through its role in empowering patients. In this paper, I focus on whether a case can be made for the justification of price transparency initiatives on the grounds of patient empowerment.

Due to the realities of the healthcare system in the United States, where prices can vary drastically between facilities and where even patients with insurance face substantial cost-sharing, it is reasonable to argue that patients should be able to know, in advance when possible, what they will have to pay for care (see, for instance, Ubel et al. [29] and Hall [30]). If patients lack information about what they will have to pay, they lack an important piece of information for making decisions about the use of their limited financial resources, and it is plausible that they are then less empowered than they would be with such information.

However, as we know from the literature on informed consent, the contribution of information to autonomy is not a straightforward function of whether information is given but also depends on how information is given (see, for instance, Moseley et al. [31] and Silva and Sorrell [32]). If information is presented in a way that the patient cannot readily understand, then, while we might feel we have satisfied our duty of disclosure, we will in fact have done nothing to enhance the patient’s ability to make an informed decision. The same applies to price transparency—to see whether it helps empower patients or enhance their autonomy, we need to determine whether patients can readily make use of this information to inform their choices.

Effectiveness

To examine whether price transparency programs effectively empower patients, we must consider both what we mean by empowerment and how price transparency tools typically work. Empowerment—often used interchangeably with autonomy—is rarely explicitly defined in the context of price transparency, but it is reasonable to understand empowerment as having to do with control over one’s life; or, more specifically, as Tengland [33] puts it, as having “control over the determinants of one’s quality of life” (p. 77). This rough definition works here as a starting point. It is certain that having relevant information is necessary for exercising control over one’s life, as it is with exercising autonomy. Knowing the costs of goods and services is important for making decisions about how best to spend one’s money, which is itself central to decisions about how to structure one’s life. Lacking this information for healthcare services thus limits one’s ability to make decisions about financial and other priorities.

For most people, then, knowing the price of healthcare would help contribute to empowerment in the sense of being able to exercise control over one’s life. But even if it is true that financial information is usually important for empowerment or autonomy, it does not necessarily follow that price transparency, as it exists in current initiatives (summarized below), is the most effective or justifiable way of achieving this goal.

Two recent federal rules aim to increase the transparency of healthcare prices at the national level. The Hospital Price Transparency Final Rule, which took effect in 2021, requires hospitals to post the prices (including negotiated charges for different payers and discounted cash prices, among others) for all services in a machine-readable file (which is not readily usable by the average person), as well as a “consumer-friendly” summary of standard charges for a more limited set of services [34]. This was followed by the Transparency in Coverage rule, which, as of 2024, requires all health insurance plans to make available, again in a machine-readable file, the in-network rate for all covered services and the allowed amounts for out-of-network providers. This rule also requires insurance issuers to develop an online comparison tool for participants to be able to estimate their out-of-pocket costs for upcoming services [35].3

These federal rules join a variety of other price transparency programs, both public and private, already underway in the United States. Many states maintain “all-payer claims databases” (APCDs), which gather information from claims processed by both public and private payers; as a result, these databases were intended to provide comprehensive information regarding healthcare prices.4 There can be a difference, though, between the data collected by the state and the information made available on public websites. While some state websites have calculators to help patients determine their own out-of-pocket costs based on the reported claims, others either do not or are not easily searchable [40–42]. In addition, few states collect information regarding costs for uninsured patients, for whom accurate pricing information could be most salient [43, 44].

Many states without APCDs also have some sort of law or regulation regarding the collection of medical cost information, often for the purpose of increasing price transparency [40, 41]. These regulations vary in terms of the type of information that needs to be reported. Many of these require that providers report their official charges for a set number of services, while others mandate only that some average charges for the facility be reported. Fewer of these require that actual payments (including out-of-pocket costs for patients) be reported [41, 42]. Because charges can differ considerably from actual payments, these programs generally provide at best a rough estimate for patient costs.

Finally, there are a growing number of private companies created solely for the purpose of collecting and making available healthcare price information [40, 45]. While some of these companies have developed free apps for the general public, most are geared toward employers and insurance companies, who pay for access to these services in part to inform decisions about which providers to include within a network. When insurance companies subscribe to these services, pricing information is then available to plan members so they can determine their out-of-pocket costs for services at specific facilities.

The current landscape of price transparency, then, is a patchwork of different tools offering different—and often noncomparable5—types of information, many of which are not easy to navigate. Does this empower patients? Building on the starting definition of empowerment as roughly equivalent to control, to empower someone else is to increase their control over their life. Similarly, in the medical context, empowerment is often described as the act of increasing capacity [47–50]. Research on patient capacity—or the “ability and readiness to do work,” as Shippee et al. ([51], p. 1043) describe it—shows that, when considering how to improve capacity, we cannot simply look at the availability of certain resources (including informational resources) in isolation. Instead, we need to look at patients’ ability to make effective use of these resources.

To see whether the information available from price transparency tools helps enhance patients’ autonomy or capacity, then, we need to look at whether patients can effectively utilize this resource. There are a number of reasons why having pricing information available may not translate into increased capacity for all patients. For instance, patients living in rural areas who have a limited ability to travel often do not have a choice of providers. Even in larger cities, the appearance of options can be an illusion. As more healthcare facilities are bought out by private equity firms or otherwise consolidated into a single system [52, 53], there is increasingly less competition within markets and thus less opportunity to leverage pricing information to find more affordable care. While it is likely still beneficial for patients to know the cost of medical services ahead of time for financial planning purposes, having access to this information in the absence of alternatives does not yield any further options besides the already existing choice of whether to accept or refuse care.

Furthermore, even where there are true options for care available, there can be other reasons why a patient may not shop around for the most affordable facility. For people with multiple and complex medical conditions, the benefits of having continuity of care with a provider well-familiarized with the patient’s history can outweigh any financial benefits to be gained from going with the most affordable option. In addition, for patients facing serious illness such as cancer for which there is only one effective or clearly superior treatment, or only one treatment center close enough to the patient (and within the patient’s insurance network), searching for more affordable alternatives would likely be neither effective nor advisable.6

However, even in cases where none of these elements are in play—where there are viable options for roughly equally good care—having pricing information available through price transparency tools still may not always increase empowerment due to the way these tools add to the existing burdens of managing and undergoing treatment for some patients. Research indicates that patient capacity will be affected by the “cumulative complexity” of not just patients’ lives but of the healthcare system itself [51, 54–57]. Most price transparency initiatives, as they are currently designed, add to rather than reduce the complexity of the healthcare system, and the energy needed to navigate this complexity may, for some patients, means there is less energy available for managing other aspects of health care. For some, then, this added complexity may result in reduced, rather than enhanced, capacity. An examination of the burdens involved in making use of price transparency tools (the next step of Kass’s framework) helps further illustrate why these tools may not be consistently empowering for all patients.

Burdens

To see why the current array of price transparency tools is not uniformly empowering, consider first the burdens of treatment and illness that exist before the additional burdens of using price transparency tools are added. A growing body of research shows how patient complexity—the interplay of the burdens of illness and treatment with the various demands of and resources available in the patient’s life—affects patient outcomes, especially for those with chronic conditions. According to the cumulative complexity model, when the patient’s workload (all of the combined demands of managing illness and treatment on top of all of their other responsibilities) exceeds their capacity (their ability to meet these demands successfully), disruptions in care are likely to result [51]. When workload and capacity are out of balance, this can be the start of a vicious cycle whereby this imbalance leads to worse health outcomes (through reduced treatment adherence, reductions in self-care activities, and/or increased stress) [51, 55, 56, 58–68]. Because much of this work is “invisible” [69], providers may not see the excessive workload as a cause of worsening outcomes and so may respond by increasing treatment and recommending further self-care activities. This then increases the patient’s workload, creating further imbalance and leading to yet more complexity over time [51, 56, 57, 59].

The burden of treatment encompasses all of the activities needed for a patient to manage their condition, including filling prescriptions, taking medications, scheduling and traveling to medical visits and laboratory tests, monitoring one’s health, participating in self-care activities such as exercise and preparing food according to specific dietary requirements, as well as managing any paperwork that accompanies medical care [62, 66, 70]. In the United States, still additional tasks can be added, such as searching for coupons for medications insufficiently covered by insurance and contacting insurance companies to receive prior authorization or to dispute charges. While these may all be manageable activities for some patients, for others, especially those facing multiple chronic illnesses, this accumulation of additional tasks can become overwhelming.

Most price transparency initiatives add additional tasks to this workload. For instance, imagine that a patient needs to know the cost of an outpatient surgical procedure. If the patient has more than one accessible hospital that offers the procedure and it happens to be one of the services these hospitals have selected to display as part of the 300 shoppable services required by federal law, the patient should theoretically be able to find useful information to help determine which hospital offers the most affordable care. But getting to this point requires that the patient know how the procedure will be coded or labeled within the hospital’s system. Next, because these price transparency initiatives rely on past claim information, patients may need to contact each facility to confirm that this information is accurate and that the providers are still part of the patient’s insurance network.7 If this information is all available, patients will still need to determine what their own out-of-pocket costs will be, as what they will have to pay will depend on factors such as how much of their deductible they have already paid for the year. (If they are uninsured, of course, they will not need to take this additional step.)

In many cases, finding this information will require going to different hospitals’ websites. The price transparency tools on these websites may differ in terms of whether they include fees and other additional costs in the listed estimate, which can affect the accuracy and comparability of this information [74]. Some states, such as New Hampshire and Florida, also collect this information and make it available on a public website, which should make it easier to make cost comparisons, but the information provided is for a limited number of procedures, and insured patients will still likely need to determine their own out-of-pocket costs. In the instance that the state is one of the few to collect information regarding patients without insurance, it may be easier for these patients to get a more realistic estimate of their actual costs. For instance, searching New Hampshire’s NH HealthCost website for the cost of arthroscopic knee surgery for a hypothetical self-paying (uninsured) patient shows the estimated total cost, the uninsured discount, and the total expected out-of-pocket costs for different hospitals across the state (see Table 1 for an example of some of these results). For a patient with insurance, the site displays the negotiated rate, not the patient’s own share of the cost. But this site, like many others, does not provide estimates for more complicated procedures, such as knee or hip replacements, which can involve extensive pre- and post-operative services.

Table 1.

Sample of cost estimates for arthroscopic knee surgery

Provider	Cost estimate	Self-pay discount	Out-of-pocket estimate
Cheshire Medical Center (Keene, NH)	$16,680	69%	$5,171
Memorial Hospital (North Conway, NH)	$11,009	33%	$7,376
Wentworth Surgery Center (Somersworth, NH)	$8,424	0%	$8,424
Wentworth-Douglass Hospital (Dover, NH)	$19,927	40%	$11,956
Porsmouth Ambulatory Surgery Center (Portsmouth, NH)	$20,788	0%	$20,788

Sample of estimates for the cost of arthroscopic knee surgery (CPT Code 29881) for a hypothetical uninsured (self-paying) patient found on the NH HealthCost website [75]. Search conducted on September 22, 2025

In an ideal situation, a patient will know how to find their individual insurance information, know the proper code or description for the procedure they need, and be in a situation where all local facilities provide comparable, up-to-date information to enable them to make a good financial decision. Unfortunately, research on the availability and usability of hospital price transparency information indicates that the reality often falls short of this ideal. While hospital compliance with the law has improved since the first year following its implementation [76], compliance is still incomplete [77–80]. And even if a hospital does provide the required information, that information may not always be easily found and understood by the patient. A study by Bechel et al. [81] found that most people could not find the relevant information needed to choose the lowest-cost of four facilities for a lumbar spine MRI—and this was even when the study subjects (who, according to the authors, were likely younger and more computer-literate than the average patient population) were both told which code to search for and shown a video explaining how to find the relevant information. Most patients will not be given such assistance.

While the Hospital Price Transparency Rule applies only to hospitals, the Transparency in Coverage rule aims to provide more comprehensive information to patients covered by insurance. Under this rule, health insurance companies are now required to provide a cost-estimator tool for all members. As a result, those who have health insurance should be able to find more tailored estimates of costs (considering their own coverage and copayments) through their insurance companies. Even with this new service, though, discovering what one will have to pay can be challenging. Patients will still need to know specifically which services they will receive, and how these are labelled in the system, to be able to get estimates, and it is not always easy for people who are not medical professionals to know in advance what services or procedures will be required. Furthermore, the presented cost is an estimate, as prices and providers may change, and it may still be necessary for the most price-sensitive patients to confirm the accuracy of this information.

For some, the added task of searching some price transparency tool will not be overly burdensome; for others, though, especially those with multimorbidity, the additional effort needed to discover usable information about costs may tip their workload that much further out of balance with their capacity. Rather than empowering them, then, this can instead threaten some patients’ ability to fully take care of their health. It could be argued that these additional tasks of searching price transparency programs for information about costs are minor relative to all the other activities people with chronic illness must partake in.8 And while this may be true, adding additional work (no matter how minor) to these patients’ already heavy workload risks moving them further in the wrong direction.

In response to earlier research on disease burden and the work involved for patients in managing chronic illness [83, 86], there has been a recent push for “minimally disruptive medicine” [54, 58, 64, 65, 87] in order to improve outcomes. Minimally disruptive medicine was developed as a patient-centered approach to medical care that, according to Boehmer et al. [54], “recognized that not all the illness work and disease burden were obligatory features of living with a condition, but that a substantial burden is modifiable and results from how health care is organized and delivered” (p. 210). Reducing these “iatrogenic” burdens (as Boehmer et al. [54] describe them) would likely reduce nonadherence and help build patients’ capacity for managing their own health [55, 60, 61, 88].

Instead of simplifying health care delivery, most price transparency programs as they are currently designed add yet a further layer of administrative burden [89] to the already excessively complicated healthcare system in the United States. Furthermore, there is reason to be concerned that those who are most in need of affordable care (those who are the least well off financially and those with multimorbidity or facing life-threatening illnesses) will be least likely to benefit from price transparency tools. As a result, relying on price transparency as a way to control costs and empower patients raises issues of fairness, the final element in Kass’s framework.

Fairness

In spite of the previously discussed limitations of price transparency, it is likely that, for at least a decent proportion of patients in need of simple, non-emergency care, effective price transparency programs could enable them to receive more affordable (but equally high quality) care. But for others who lack access to competing providers, or who need more complex care, this effort is less likely to help them make better informed decisions when selecting a provider. Because of this, any potential autonomy benefits from price transparency are not guaranteed to be distributed fairly.

To effectively make use of price transparency tools to select more affordable care, a number of factors need to be in place. First, the person needs to have internet access and know enough about both how to navigate the particular price transparency tool and which search terms to use to find the price for the care they need (and they also need to be able to take the time to do this searching). Next, as previously mentioned, they need to live in an area with competition among providers and for there to be more than one acceptable option available for any treatments the person needs. In addition, any medical conditions the person has should be not so serious or complex that the value of provider continuity outweighs any financial benefits to be gained from switching to the most affordable provider. Finally, if the most affordable option is farther away, the person needs to have access to transportation and enough flexibility in their schedule to be able to travel for care. However, people with limited incomes are often heavily burdened by other responsibilities (working long hours or multiple jobs, possibly while also having heavy caregiving responsibilities), while also being more likely to experience multimorbidity [90]. Research further indicates that people who are at the lower end of the income scale are also likelier to have more limited digital and health literacy [91, 92], making it harder to successfully manage the additional work of navigating these tools. It is plausible, then, that those best positioned to take advantage of price transparency will be on average younger, healthier, and financially better off than most patients.

Thus, those who will be most able to benefit from the existence of price transparency programs will not necessarily (or even likely) be those who are most in need of clear information about costs. Research on the impact of publishing information about nursing home quality gives further reason to worry about this. In this case, researchers found that the most vulnerable (those who are the least well off financially and in worse health) were less able to make use of this information (both due to the difficulty of accessing and understanding the information on public websites and to the lack of options and competition in poorer areas), leading to increased disparities over time [85, 86]. Citing this research, Pollack [87] notes that those “with the most serious illnesses also might not be well positioned to benefit from price transparency, as the burden of comparison shopping falls to ill patients or their… already overworked caregivers” (p. 1071).

Furthermore, in a review of research on the impact of price transparency in health care, Zhang et al. [25] note that older and lower-income consumers are less likely to take advantage of price transparency programs (perhaps unsurprising, given the difficulty of navigating these tools). In this way, price transparency may in practice be less usable for those in greater need of affordable care. Because of this, Zhang et al. caution that price transparency could ultimately worsen health inequality. Given the difficulty of navigating many price transparency tools and their limited utility to patients without viable options, then, it is hard to argue that these tools are implemented fairly or that their benefits and burdens are fairly balanced. However, a consideration of how the burdens of price transparency could be minimized (another component of Kass’s framework) also shows how price transparency could be both more fairly implemented and more effective for empowering patients.

Passive Versus Active Price Transparency

As discussed earlier, some of the barriers that prevent patients from being able to leverage pricing information to discover more affordable options for care are structural, having to do with limited competition due to consolidation and the closing of facilities. Others arise due to a lack of treatment alternatives for certain conditions, leading to price inelasticity. These are not problems that can be addressed through a redesign of price transparency.

Other barriers, however, are due at least in part to the design of price transparency tools, and some of the burdens imposed by these tools could be reduced by changing how and where patients receive pricing information. Most price transparency programs, as described earlier, require patients to seek out this information themselves. In this way, they can be considered instances of passive price transparency. However, it is possible to envision more active price transparency initiatives—where patients are instead directly given information about costs.

While such active price transparency programs may be rare, at least one such initiative has been described in the literature. In a study by Wu et al. [16], patients needing MRIs were contacted with pricing information for the facilities providing such scans nearby. Not only did researchers find that this initiative was associated with reductions in the price of MRIs (in the area that received the intervention, the average total cost of an MRI went down by $99 over a two-year period, while it went up $97 for the cohort that did not participate in the price transparency program). In this case, importantly, patients did not have to seek out this information themselves.9 They received useful and relevant information10 without adding to their workload. This example points to a way price transparency could be modified to be more fair, less burdensome, and more effective for empowering patients.

Reforming Price Transparency

Overall, the existing landscape of price transparency tools in the United States is not likely to be uniformly and significantly effective for empowering patients on the basis of price, due in part to the burdens involved in utilizing these tools. Furthermore, those who are most in need of affordable care and clear information about costs are the least likely to be able to benefit from these tools. Thus, an analysis of these programs through the lens of Kass’s public health ethics framework shows that it is difficult to justify relying on them as the primary method for empowering patients regarding price. However, as long as the healthcare system in the U.S. remains largely as it is (a market-based system with high prices, extensive price variation, and significant numbers of uninsured and underinsured patients), patients need and deserve to know what health care will cost them. If patients can go bankrupt because of healthcare costs or if they must choose between medications and rent or food for their families (as many do),11 then, absent the likelihood of dramatic healthcare reform, there is a moral imperative to make sure patients have the information they need to make the best medical and financial decisions for themselves. But this information should be made available to them in a way that does not risk further depleting capacity for patients already overburdened by navigating care in a complicated healthcare system.

Because they require patients to take the initiative to look for and make sense of the information these programs provide, most existing price transparency programs, as I have argued, are inadequate for satisfying this moral imperative. If we really are concerned with ensuring that patients have the information they need to make decisions about their medical care, then what is needed is active rather than passive price transparency.

Christopher A. Bobier [98] proposes a new CMS rule that would satisfy this need for active price transparency, at least in many instances. This proposed rule would require physicians to tell patients what their expected out-of-pocket costs would be (with this information individualized based on the specifics of their own insurance status) before receiving any (non-emergent) medical service. As Bobier argues, this rule would be consistent with the stated aims of existing federal price transparency rules while ensuring that this pricing information is actually useful and relevant for patients. In addition, this is information that is already collected by providers and insurers; the difference would be that this information would be given directly to patients as a standard practice, rather than patients having to find it. (This practice, as Bobier notes, would also put health care more in line with other industries, where buyers are typically aware of costs before committing to a purchase or service).

Such a rule would, of course, face objections. Some of the most significant of these are raised by Sherry Glied [99] in a response to Bobier. Glied notes that such a rule would be costly to implement, both in terms of the administrative costs for the healthcare facilities and in terms of the time required for physicians to discuss financial issues with patients.

As visits with physicians and other healthcare providers are already notoriously compressed, asking them to do more with the limited time they have with patients is a significant concern that should be addressed. It is possible that costs would not always have to be discussed in person; it may at times be acceptable to instead provide patients with a written after-visit summary of likely costs for any recommended treatments or services. But a strong case can be made, both in the interest of empowering patients and achieving potentially better patient outcomes, for at least sometimes adding this task to the list of things to be addressed during a healthcare visit.12 As the research on treatment burdens and the push for minimally disruptive medicine illustrate, excessive burdens (including financial burdens) can lead to worse health outcomes. While a particular course of treatment might be considered best from a purely medical standpoint, it may not be best in practice if it increases a patient’s burdens to the extent that the patient ultimately fails to adhere to it. In such a case, a treatment that may otherwise seem less ideal could in fact be preferable if it is one that the patient can successfully add to their existing workload. But the burdens (financial and otherwise) that lead to nonadherence are invisible to physicians unless they are explicitly discussed with patients.

Advocates of minimally disruptive medicine argue that openly discussing the patient’s existing burdens enables the physician to develop a plan that will be workable for the patient, and thus more likely to lead to better outcomes. Accordingly, discussions of costs should not be seen as simply a drain on the physician’s time, but instead as an important part of what it takes to determine an effective treatment plan for patients. Recognizing the importance of these conversations, organizations such as the American Society of Clinical Oncology [100] and the American College of Physicians [101] have been developing resources to assist providers in determining and discussing costs with patients. While creating and sharing these resources takes money and time, such investments are arguably necessitated by the complex nature of our healthcare system. We should encourage further research on how to enable providers to effectively engage in these conversations.

Another potential objection to reforming price transparency in this way is that disclosing costs as part of treatment discussions may make patients less likely to accept care. This is a legitimate concern. However, this is a problem highlighted, not created, by price disclosure. It is true that some patients may choose to reject treatment they would otherwise accept if they were unaware of the costs, but it is also true that some patients avoid medical visits due to fears and uncertainty about costs [8, 96, 102]. Thus, it is possible that greater financial clarity would make some patients more willing to accept care, not less, as a specific price is easier to adjust to and plan for than an unknown looming charge.

It may, quite understandably, be uncomfortable or distasteful for physicians to have financial discussions with patients. They are trained and (rightly) motivated to seek out the best treatments for their patients, and discussing costs with patients lays bare the fact that, in the United States, the best care is often only truly available to those who have the best health insurance or sizable financial resources. But this is due to the health care system itself, and these facts do not go away if we refuse to bring them into the exam room. Just as a provider may end up prescribing what is in practice less effective care if they do not consider other aspects of the patient’s life (such as their ability and willingness to administer their own injections), so do financial limitations need to be factored in when considering which treatment plan will be best. If we believe that patients’ financial status should not affect treatment recommendations, then we need to work on changing the healthcare system itself, rather than pretending these factors are not in play.

None of the preceding, though, should be taken as an argument that provider-driven cost disclosures should entirely replace all other price transparency initiatives. On their own, these initiatives are all inadequate and, as I have argued, they are often overly burdensome and difficult to use for those most in need of cost information. And, importantly, these initiatives often leave significant information gaps when it comes to emergency services and the uninsured. But the solution to this far-from-perfect patchwork is not to go back to having less transparency.13 As long as the United States continues with its current healthcare system, information about costs needs to be made available in as many places and in as many (easily accessible) forms as possible. This (as Glied points out) makes our healthcare system even more administratively complex, but, again, this is a result of the complexity of the system itself. If we believe this would make the system excessively complex, then the morally justifiable solution is to work to reform the system, rather than to continue shifting more of the burden onto patients.

Conclusion

Current price transparency initiatives in the United States aim to control healthcare costs in large part by empowering patients to shop for more affordable care. I have applied Kass’s public health ethics framework to provide an ethical analysis of these initiatives. This framework prompts us to assess a program based on its effectiveness, benefits and burdens, and fairness. To date, price transparency initiatives have not proven to have a significant effect on costs (and may sometimes lead to higher prices), and this may be because they do not consistently empower patients. Instead, because these are largely passive initiatives that require patients to seek out pricing information themselves, and because this information is not always easy to find or understand, they can add the burden of determining costs to the other burdens patients face when navigating medical care.

Price transparency initiatives, especially as they are typically constructed, can thus contribute to the “invisible work” [69] of patients, which is the work patients do outside of clinical visits to manage their condition and maintain their health. These burdens can be the greatest—and pose the most threat to overall patient capacity—for patients dealing with multiple chronic illnesses, who are already heavily burdened by health care and are also often in greatest need of clear information about costs. Furthermore, even when price transparency initiatives do provide relevant and useful (and easily discovered) information to patients, a growing lack of options and competition in many areas due to widespread consolidation of healthcare facilities means that patients are often unable to use this “empowerment” to locate real options for more affordable care.

Instead, I have argued that active (rather than passive) price transparency is needed if the aim is to empower patients to make better-informed decisions about health care. Incorporating discussions of costs alongside discussions of other burdens of treatment may also have the added benefit of helping providers and patients determine treatment plans that will be more effective in practice, helping us get closer to the goal of minimally disruptive medicine.

While existing price transparency initiatives may have their place as part of the patched-together network of pricing information necessitated by our patched-together healthcare system, they pose a danger if they make us think we have taken meaningful action to control prices and empower patients. We need to ask ourselves what we are not doing because we have decided to solve the problem of high prices with price transparency. If these initiatives are seen as an actual solution for reining in healthcare costs, they may end up being little more than a placebo standing in the place of other, more effective and less burdensome solutions.

Author Contributions

A.H. was the sole contributor to all aspects of manuscript development.

Data Availability

No datasets were generated or analysed during the current study.

Declarations

Competing Interests

The authors declare no competing interests.