There is no single national system of health insurance for U.S. residents. Instead, health care in the U.S. is a mixed system with some health insurance purchased in the private “marketplace” and some provided by the government to certain at-need groups.
One of the perceived strengths of this system is that people are not told who can treat them and what they can be treated with. In theory, people have a freedom to choose how they consume health care. However, the reality is there are limits on a patient’s ability to act as a consumer in the traditional sense.
“I am not somebody [who] believes that patients can function as traditional consumers in the health care system,” said Jerome E. Seid, MD, a medical oncology specialist at Great Lakes Cancer Management Specialists in Michigan. “It is an unequal relationship where the need for services is typically predicated on an illness and that limits the freedom for patients to shop around to find services that are better aligned with their wallet.”
Money isn’t the only element that has the potential to drive consumer behavior in health care – expertise and quality of care can also affect a patient’s decisions. In hematology, all of these elements are important to patients, although the urgency of the diseases and the specialized nature of the field limit choices as compared to other fields of medicine.
ASH Clinical News spoke with Dr. Seid, other practitioners, and health policy experts about the evolution of modern health care, how patients exercise their power as consumers, what barriers they face, and how consumer choice affects hematology practice.
How We Got Here
The idea of health care being a market-based system has roots that go back hundreds of years, according to Mark Schlesinger, PhD, professor of public health at the Institution for Social and Policy Studies at Yale University.
“Before medicine had largely been professionalized, when the average surgeon was also a barber and everyone was selling medical elixirs, there was a lot of market focus in the industry,” Dr. Schlesinger said. “As higher standards for education were adopted and the government passed the Food and Drug Act banning certain advertising, there began to be a resistance to the notion of markets for health care.”
In fact, the pendulum of consumer choice swung in the opposite direction for much of the mid-20th century from the 1920s to the 1970s, Dr. Schlesinger said.
During this time, the market all but disappeared and there was more of an acceptance of total professional control of medicine and medical decision-making. These relationships were more paternalistic “between a dominant doctor and a passive patient ... with doctors regarding a ‘good patient’ as one who submissively accepted the passive role of the infant.”1
By the early 1970s, activism increased and efforts such as the women’s health movement, “Our Bodies, Ourselves,” and the disability rights movement arose. People began to chafe against these professionally defined norms, Dr. Schlesinger explained.
“There was a rebalancing of the role of the consumer versus professional authority,” Dr. Schlesinger said. “If you think of ‘Our Bodies, Ourselves’ as a prototype, it was a manual for understanding health in advance of seeing a doctor. It was a collaboration of consumers with their doctors.”
These and other organized patient movements focused on making sure that treatment decisions were not made without considering the input of the patients, said Michael Gusmano, PhD, a professor of health policy in the College of Health at Lehigh University.
In parallel to these patient movements, several other important things were occurring, Dr. Gusmano said. In 1965, Medicare and Medicaid were created, and the government began tracking U.S. health care spending. Soon after, in 1969, President Richard Nixon declared that the U.S. was facing a “massive crisis” in health care spending, which prompted worry about the implications of this spending on federal, state, and local budgets.
“At this point, we had politically rejected the idea of any form of universal coverage with a system that operates under a national budget,” Dr. Gusmano said. “In its place grew the idea that the big problem we had to solve was excess volume: people buying too much health care.”
Since that time, Dr. Gusmano said, there have been various solutions proposed to infuse the health care system with market competition.
“The idea was to give people skin in the game,” Dr. Gusmano said. “To give patients a financial incentive to shop around for less experience or more cost-effective care.”
Patients as Consumers
The ways in which a patient can act as a health care consumer vary tremendously, depending on what services are considered health care, Dr. Schlesinger said.
“If someone is buying a pair of eyeglasses, for example, that is a very consumer-driven market where people can shop around, look at pricing, or look at consumer reports for different manufacturers,” Dr. Schlesinger said.
These types of services and other non-life threatening or elective-type procedures – think plastic surgery or joint replacements – fit better into a market-oriented arena. Patients also have some flexibility in their selection of primary care physicians.
Patients also act as consumers simply by becoming more informed about their care and their care options. For example, the U.S. is one of only two countries in the world – the other being New Zealand – that allows direct-to-consumer advertising.
“If you ever watch TV, [medications] are advertised over and over again,” Dr. Schlesinger said. “They don’t give people all the information they need, but it can help people make wise choices or at least to know that there are choices available.”
In his research of medical consumerism, Dr. Schlesinger explores how people choose, or not, to inform themselves about medical decision-making. When dealing with diagnostic issues, for example, do people go online first? Do they go to the doctor and then go to the internet? Or, do they just put their care in the doctor’s hands?
This right to be informed or have information is evident in other aspects of health care as well, such as laws against false or misleading medical advertising or informed consent related to participation in clinical trials.
This type of patient empowerment, a right to information and a right to safety, was applied more specifically to the hematology/oncology realm when the California legislature passed its Cancer Patients Bill of Rights in 2021.2
“This is a set of core principles, including the right to have your diagnosis explained to you using culturally appropriate and understandable language,” said Joseph Alvarnas, MD, professor in the Department of Hematology and Hematopoietic Cell Transplant and vice president of government affairs at City of Hope in Duarte, California. “This is to make sure patients understand [the diagnosis] so that they can make the best choice and have access to the right experts in a way that reduces burden as much as possible.”
Lacking Consumer Power
While there are some aspects of health care that support consumer behavior, there are also many ways in which the U.S. health care system prevents this behavior.
Dr. Seid drew a comparison with buying a car, where a consumer can walk into a car dealership, pick a model, and get a price, then walk across the street to another dealer and get the same product but for $500 less. This is typically possible because the situation lacks urgency, Dr. Seid said.
Health care, on the other hand, is often urgent.
“The health care market doesn’t operate like other markets because you can’t really comparison shop,” Dr. Seid said. “There is very little access to meaningful data to tell patients if they are getting a good ‘deal’ or not.”
There has been legislation that attempts to bring more price transparency to the health care consumer. In October 2020, the Departments of Health and Human Services, Labor, and Treasury implemented the Transparency in Coverage Final Rule that has two provisions for payers offering individual and group commercial health insurance. First, payers must publish machine-readable files detailing negotiated rates for specific health care services. Second, they must provide members with online price estimation and comparison tools for 500 designated services.3,4
Another example is the No Surprises Act, which was passed in 2022 in an attempt to eliminate surprise bills that patients receive for medical services. It mandates that providers give uninsured patients an upfront good faith estimate of the cost of care.5
Still, this information is not simple to find or use and so does not exactly create utility as a consumer tool.
In his research, Dr. Schlesinger has found that several factors might affect a patient’s use of health care cost information, not the least of which is education and health literacy.
“Medical information websites are laden with jargon and assumptions that many people would [need] at least a master’s degree in public health to figure out,” Dr. Schlesinger said.
Ease of access is also an issue, with as many at 19 million Americans still lacking high-speed internet access.6 For those who do have internet access, the question becomes how much time is available to conduct research.
Time makes a difference, Dr. Gusmano said.
“You have to ask, ‘How much time do people have to invest into looking carefully at price and quality metrics and researching cost-effectiveness?’” Dr. Gusmano said.
According to Dr. Schlesinger, there do not seem to be strong differences in research behaviors based on a patient’s race or ethnicity, although some differences have been noted.
“In fact, we have found that minority populations tend to be more active in collecting information about health care choices and clinician choices [compared with white patients],” Dr. Schlesinger said, adding that the reasons for this are unknown.
Even when patients have the time and desire to research health care information, applying this desire to the hematology setting is almost impossible, Dr. Alvarnas said.
“Patients as consumers are in no position to have the expertise to understand what the whole episode of care for something like diffuse large B-cell lymphoma entails,” Dr. Alvarnas said. “The connectedness required to get the right diagnosis and the right care, or access to the right clinical trial, and have it delivered with continuity does not lend itself to parsing it out.”
Geography also plays a major role in a patient’s ability to act as an informed consumer of health care.
“There is a big urban and rural difference for certain health care choices,” Dr. Schlesinger said. “Geography doesn’t seem to matter much when it comes to drug choice or availability, but if you are trying to find a good hematologist, you might be pure of out luck in certain areas. People won’t even bother to look for information to make an informed choice because there aren’t any choices to be made.”
Finally, one of the largest limitations in the U.S. health care system when it comes to patient choice is health insurance coverage networks. One of the ways that payers attempted to offer competitive pricing in health care marketplaces was to give patient beneficiaries access to a smaller network of providers.7
When it comes to cancer care, research has shown that these narrow networks had a higher likelihood of excluding oncologists affiliated with National Cancer Institute–designated or National Comprehensive Cancer Care cancer centers, suggesting that “narrow provider networks may not just have fewer providers from which to choose; in addition, the more limited list of available providers may not offer the same quality care as those providers who have been excluded from the network.”8
The Hematology “Customer”
Instead of a consumer, the idea of a patient as a customer is a valuable concept, Dr. Alvarnas said. Think about it like customer service.
Dr. Seid speaks with his staff about the patients as customers and how they can improve the customer experience.
“I harken back to my youthful days as a waiter and my role in making sure those customers were continuously being attended to and not waiting long times without services,” Dr. Seid said. “We don’t want patients sitting unattended, waiting a long time, or getting angry.”
When patients decide to switch doctors, Dr. Seid said, it is rarely because of cost, but because of inefficiencies in the office or things like the bedside manner of the physician.
All good customer service in health care begins with the idea of patient-centered care, a concept that focuses on active collaboration and shared decision-making.
“Good customer service is about ensuring that the experience is humanizing, respectful, and compassionate,” Dr. Alvarnas said.
Practicing medicine with a sense of patient-centeredness means supporting patients through their journey with the utmost dignity, compassion, and kindness. It means delivering information in a way that is most effective for the patients and working effectively with care navigators and other non-health care actors in a way that engenders better choices and agency throughout the care experience, Dr. Alvarnas said.
For hematologists, patient-centeredness means delivering care that not only explains genomic testing, clinical trials, or the newest technologies and treatments, but also sitting down and listening to what is important to the patients.
“From the first encounter, listen to challenges, to limitations of care,” Dr. Alvarnas said. “Consider a patient’s social determinants of health, but also try to understand a person at an emotional level beyond economics and geography.”
When thinking about a patient as a customer, Dr. Seid said, it is important to remember that effective, value-based health care is not something that patients can do alone.
“Physicians have a moral obligation to advocate for the patient,” Dr. Seid said. “In some cases, patients have minimal power and cannot do it alone.”
- Kaba R, Sooriakumaran P. The evolution of the doctor-patient International Journal of Surgery. 2007;5(1):57-65.
- Marquez L. California Assembly passes cancer patients bill of rights. August 19, 2021. Accessed February 5, 2023. https://www.cityofhope.org/breakthroughs/california-assembly-approves-cancer-patients-bill-of-rights.
- Wang Y, Xu J, Meiselbach M, Wang Y, Anderson GF, Bai G. Insurer price transparency rule: what has been disclosed? Health Affairs Forefront. February 2, 2023.
- CMS.gov. Transparency in coverage final rule. Accessed February 7, 2023. https://www.cms.gov/CCIIO/Resources/Regulations-and-Guidance/Downloads/CMS-Transparency-in-Coverage-9915F.pdf.
- CMS.gov. Fact sheet. No surprises: understand your rights against surprise medical bills. January 3, 2022. Accessed February 5, 2023. https://www.cms.gov/newsroom/fact-sheets/no-surprises-understand-your-rights-against-surprise-medical-bills.
- Federal Communications Commission. Eighth broadband progress report. Accessed February 6, 2023. https://www.fcc.gov/reports-research/reports/broadband-progress-reports/eighth-broadband-progress-report.
- Caballero AE, Murray R, Delbanco SF. Are limited networks what we hope and think they are? Health Affairs Forefront. February 12, 2018.
- Yasaitis L, Bekelman JE, Polsky D. Relation between narrow networks and providers of cancer care. J Clin Oncol. 2017;35(27):3131-3135.
Do Online Physician, Hospital Ratings Matter?
Most people who have bought something on the internet are familiar with online ratings. Physician-rating websites are no different. Patients or caregivers can leave “stars” and narrative reviews or fill out surveys detailing their experience with health care providers. Some payers have even incorporated these reviews into their provider databases. For example, United Healthcare includes star ratings powered by HealthGrades.
How much do these online ratings matter? It is hard to know, according to Mark Schlesinger, PhD, professor of public health at the Institution for Social and Policy Studies at Yale University.
“Among people who go to the internet first before making a health care decision, it may matter,” Dr. Schlesinger said. “If they are looking for a new provider they may go to the internet and look at a bunch of names and see what people have written.”
However, it is hard to know if these websites get enough widespread use that they drive health care decision-making, said Michael Gusmano, PhD, associate professor and director of the concentration in health systems and policy in the Department of Health System and Policy at Rutgers University.
“A lot of decision-making over where to go for care is driven by which plan a person is in and other contractual relationships,” Dr. Gusmano said.
Additionally, it is important to remember that the information on these websites is often not regulated, can be inaccurate, and can be manipulated or fabricated, said Jerome E. Seid, MD, a medical oncology specialist at Great Lakes Cancer Management Specialists in Michigan.
“I have had patients find me by surfing the net,” Dr. Seid said. “Generally, though, patients come in because a doctor has referred them or a family member or someone they know has recommended me.”
One study at a quaternary cancer center that compared patient satisfaction scores from physician-rating websites against internally generated patient satisfaction scores found that internal scores were higher and calculated based on a greater number of reviews. The study researchers recommended publishing internal scores “to give patients more complete information regarding physician performance.”1
Other research has shown that crowd-sourced hospital ratings from sources like Facebook, Google, and Yelp were correlated with Hospital Consumer Assessment of Healthcare Providers and Systems scores.2
For specialists dealing with patients with chronic conditions, like some hematologic conditions, these ratings could matter a lot, Dr. Schlesinger said. These patients are often looking to build a long-term relationship with their clinician.
“Patients with chronic conditions can become a kind of activated consumer population because they have built up their own expertise over time,” Dr. Schlesinger said. “In reality, though, we just don’t know how much anyone is consulting these websites and how often they are satisfied with the information they found there.”
- Kim C, Chisholm G, Bevolo A, et al. Comparison of internal patient satisfaction scores at a cancer center with star ratings on online physician-rating websites. JCO Oncol Prac. 2021;17(8):e1181-e1188.
- Synan LT, Eid MA, Lamb CR, Wong SL. Crowd-sourced hospital ratings are correlated with patient satisfaction but not surgical safety. Surgery. 2017;170(3):764-768.