Healthcare is increasingly touted as consumer- or patient-centered. Research is beginning to show that revealing and catering to consumer preferences can lead to better outcomes, more efficient spending and higher patient satisfaction. But our health system too often fails to provide what consumers really want and need.
This Easy Explainer describes one of six consumer healthcare engagement points explored in the Hub’s Research Brief No. 18, Consumer-Centric Healthcare: Rhetoric vs. Reality, which outlines how these failings could be addressed and encourages a discussion of how to elevate, support and validate the consumer’s voice.
The vast majority of Americans trust their doctor-86 percent.1 This often results in patient reluctance to take a more active role in their care (61% are content with having the doctor in control or largely taking control during a visit). Researchers believe that this high level of trust could lead to a biased perception that their doctor would never deliver unnecessary care. For example, despite national estimates that up to one-third of care is duplicative, unnecessary or harmful,2 more than 90 percent of consumers agreed with the statement that “my doctor would never recommend a test or procedure unless it was necessary.”3
For many patients, a doctor visit is the best opportunity to become engaged in their own health.4 In that encounter, consumers want to be heard, understood and given clear directions.5 Nearly nine in 10 consumers say if their doctor provides them with material when diagnosed with a health condition, they read it as soon as possible.6
As a general rule, patients think in terms of outcome preferences (e.g., prevent another heart attack or fixing a sprained ankle) rather than the treatments that can lead to those outcomes. However, as patients become more informed, they become more likely to express a treatment preference.7 In other words, the more informed a patient becomes the more they are likely to have knowledge of, and opinions about, the treatment options available to them.
Most consumers (95 percent) believe it is important that doctors tell them about the results of medical research when making treatment decisions.8 However, consumers believe evidence regarding care or treatment that works for most people may not apply to them and want to avoid “one-size-fits-all” or “cookie-cutter” medical treatments.9 If they don’t believe the evidence is relevant to their situation, they may use other criteria to make their treatment decision, such as personal preference or convenience, the doctor’s clinical judgment and out-of-pocket costs.10
Consumers believe that financial interests may sway how evidence of medical effectiveness is presented by payers and providers; therefore, they have a positive view of government-required public reporting of treatment effectiveness.11
Consumers prefer that their provider not consider costs when weighing treatment options.12 But they want information on their own out-of-pocket costs, believing that they personally should considering costs when weighing evidence and understanding care options.13 Nine in 10 consumers believe it is important to know their out-of-pocket expenses for specific services with specific providers, including insurance deductibles, copayments and other cost-sharing.14 Moreover, consumers want information for a complete episode of care rather than individual services delivered as part of that care.15 For example, when given a cost estimate for a surgical procedure, they do not want to be surprised by additional costs such as anesthesiologist fees.
Consumers also strongly prefer integrated information that allows them to simultaneously compare quality and cost information for the various options they are considering.16 When cost information is presented without accompanying quality information, consumers may use price as a proxy for quality-higher cost equals higher quality.
Evidence is mixed with respect to consumer views concerning the relationship between the cost and quality of procedures or services. Several studies show they don’t believe they are linked. For example, most consumers (58 to 71 percent)17 do not believe there is an association between cost and quality in choosing a doctor or medical care. But in the absence of other information about the efficacy of treatment, consumers sometimes report that high costs signals high quality for them.
But consumers express more interest in treatment information than they tend to seek in real life. Fewer than two out of five consumers used price or quality data to inform their decisions in the past 12 months; only 38 percent looked for healthcare quality ratings before they received services, and only 36 percent asked how much their healthcare service would cost in advance.18 This may be due to “clutter” or information overload. Decision-making research shows that more information does not always improve decision-making, and frequently may actually undermine it.19 Other explanations include: lack of awareness of provider quality variation, insulation from out-of-pocket expenses at the point of service, and the inadequacy of current information sources.20
All income groups are going to the Internet to find information, but lower-income consumers often don’t know the precise terms to use.21 In general, lower-income consumers are less satisfied with existing healthcare resources and spend less time searching for health information.22
Our greatest failure is that far too many consumers do not get care they believe they need due to concerns about cost.23 Many others get care but then struggle to pay the resulting bills (as discussed in the next section).
When patients do receive care, too often that care is not aligned with their preferences. For example, in a study of more than 1,000 office visits in which more than 3,500 medical decisions were made, less than 10 percent of decisions met the minimum standards for informed decision making.24 Similarly, a study showed that only 41 percent of Medicare patients believed that their treatment reflected their preference for palliative care over more aggressive interventions.25 There is also significant variation in the use of procedures, particularly those for preference-sensitive conditions, which suggests that patients may receive care aligned not with their values and preferences.
Failure to use informed, shared decision-making is a missed opportunity to reveal patient’s preferences and goals. As described above, patients make different decisions about whether to have tests, treatments, or procedures when they are well informed and their preferences are taken into account, resulting in more satisfied patients and better allocation of system resources. This failure may stem from:
Preference misdiagnosis is widespread. Doctors are highly trained in medical diagnoses, but not in diagnosing patients’ preferences, even though the evidence shows that the right treatment-the treatment that the patient wants when fully informed-is dependent on patient preferences.29 A large body of evidence shows that doctors, in general, are unskilled at diagnosing what patients want.30 Three types of evidence support this conclusion: studies show how treatment preferences change after patients become well informed; studies of outcome preferences show differences between the outcomes that patients prefer and the outcomes that doctors think they prefer; and studies of geographic variations in care show that the variations can only partially be explained by causes other than the preference misdiagnosis.31
Dissatisfaction. When asked to infer their patients’ satisfaction with their care, doctors estimated that 76 percent of patients were satisfied, but only 39 percent were.32 Moreover, vulnerable consumers are three times more likely to feel disrespected by doctors and other providers.33 Those that feel disrespected are twice as likely to not follow their treatment regimen.
Lack of consumer and patient engagement at the organizational design and governance level. Healthcare organizations such as hospitals, ACOs, clinics, and nursing homes are slow to integrate patient preferences, values, experiences, and perspectives into their design and governance.
Failure to provide publicly reported information geared to consumer preferences. Consumers first need is for information on how outcomes differ across treatment options, public quality reporting is not specific to one’s doctor. In choosing a doctor, consumers prefer condition-specific or procedure-specific information reported at the individual physician level, yet most publicly reported quality information is not condition or procedure specific and focuses on the general performance of hospitals, medical groups-not at the individual physician level.34
Meaningful price information is hard to obtain prior to receiving care.35 Shortcomings include:
Finally, consumers are generally unaware of comparative quality and cost information. For consumers to be more aware of their options and their costs, reporting entities need to lower the burden on consumers to track down and use information.36 Lower levels of consumer use of information may reflect issues with the availability of relevant data and the design of the tools to deliver those data, rather than a lack of interest in comparative assessment of quality and costs.
Encourage shared decision-making and train doctors and other health providers in preference diagnosis. Shared decision-making that takes place in a clinical setting discards the notion that the provider is the only person who needs access to available evidence.37 It often involves the use of patient decision-making aids such as online interactive information and applications, as well as written material in pamphlets or booklets.
And when doctors accurately diagnose patient preferences, an enormous source of waste-the delivery of unwanted services-is eliminated. This is especially true when doctors accurately diagnose the preferences of patients with long-term conditions who are far more likely to keep their conditions under control with fewer hospitalizations and emergency department visits.38
In this vein, with the advent of ACOs and other coordinated efforts at multiple levels within health organizations, a concerted effort to change physician and other clinician perceptions and behavior is needed. Such efforts should also include training in medical schools.
Reimbursement and Organizational Changes
Payers and purchasers’ reimburse doctors for taking more time with their patients, and health systems can maximize the value of physicians’ appointments by using paraprofessionals, such as health coaches, to obtain information about patient preferences and help patients with lower activation levels to understand their medication and follow-up appointment schedules.39 Health systems should increase their focus towards trying to eliminate preference misdiagnoses, so that patients receive the care they prefer and need. Moreover, benefit designs should be smarter, such as having lower or no copayments for office visits to manage chronic conditions to incentivize patients to seek care and be more active in their treatment regimens. Purchasers’ policies can also indicate to healthcare organizations where resources should be allocated, such as support to patient engagement and discharge planning.
Hospital policy changes that can increase patient engagement include enabling families to visit 24-hours a day; bedside rounding-conducting doctor and team rounding at the bedside; having nurses give shift reports at the patient’s bedside; patient-centered discharge planning; and electronic health records that patients can access and edit.40
Address Consumer Information Needs
Healthcare costs should be integrated (e.g., all out-of-pocket costs based on the consumer’s specific insurance plan) and quality information at the physician level. Insurance companies can make this data available and match the insured’s out-of-pocket exposure with specific services.
Consumers should be provided with information about the complete episode of care. Consumers want information for a complete episode of care, without surprise medical bills, that identifies their out-of-pocket costs based on the negotiated rates between the insurer and the providers, such as in bundled payment arrangements.
Comparative cost and quality reports should include a variety of techniques to help users comprehend information, understand the relevance to their personal situation, and make choices that reflect both the evidence for a treatment or service options and the consumer’s personal preferences.41
Evidence shows that consumers are more likely to use comparative cost and quality information if they fall into one of three groups: those with greater financial exposure or with benefit designs that encourage cost-conscious choices (such as reference pricing), those seeking elective procedures, such as joint replacements, and those seeking maternity care or low-complexity, routine procedures such as immunizations, cholesterol screening and colonoscopies. Reporting entities need to do a better job integrating quality and cost information in a way that enables consumers to easily understand and access this information.
Make the information relevant and its display simple. Using less detail in presenting cost information, and putting quality information adjacent to cost information, and indicating higher value with checkmarks or blue ribbon symbols, saved consumers time and was easier for them to understand. Comparative reports should include a variety of techniques to help users comprehend the data, understand their personal relevance, and make choices that reflect a combination of the evidence and their personal preferences.
1. Lynch, Wendy, Kristen Perosino, and Michael Slover (Spring 2014).
2. Best Care at Lowest Cost: The Path to Continuously Learning Health Care in America, The Institute of Medicine (2012).
3. Lynch, Wendy, Kristen Perosino, and Michael Slover (Spring 2014).
4. Légaré, France, and Holly Witteman, “Shared Decision Making: Examining Key Elements and Barriers to Adoption into Routine Clinical Practice,” Health Affairs, Vol. 32, No. 2 (February 2013).
5. Findings from Deloitte’s 2016 Consumer Priorities in Healthcare Survey, Deloitte (2016).
6. Novant Health–Harris Poll (March 30, 2016).
7. Mulley, Albert, Chris Trimble, and Glyn Elwyn, “Stop the Silent Misdiagnosis: Patients’ Preference Matter,” BMJ, Vol. 345 (2012).
8. Carman, Kristen, et al, “Understanding an Informed Public’s Views on the Role of Evidence in Making Health Care Decisions,” Health Affairs, Vol. 35, No. 4 (April 2016).
12. Sommers, Roseanna, et al.,” Focus Groups Highlight That Many Patients Object to Clinicians’ Focusing on Costs,” Health Affairs, Vol. 32, No. 2 (2013).
13. Yegian, Jill, et al., “Engaged Patients Will Need Comparative Physician-Level Quality Data and Information About Their Out-Of-Pocket Costs,” Health Affairs, Vol. 32, No. 2 (February 2013).
14. Trends in Healthcare Payments Sixth Annual Report: 2015, InstaMed (May 2016).
16. Yegian, Jill, et al. (February 2013).
17. Phillips, Kathryn, David Schleifer, and Carolin Hagelskamp, “Most Americans Do Not Believe That There is an Association Between Health Care Prices and Quality Of Care,” Health Affairs, Vol. 35, No. 4 (April 2016). Consumers Union’s own research reveals a widespread consumer bias whereby consumers believe health care quality is in the US is high and uniform. A minority of consumers do understand that quality varies, which may come from having had a poor experience with the health system.
19. Shaller, Dale, Consumers in Health Care: The Burden of Choice, California HealthCare Foundation (Oct. 2005).
20. Yegian, Jill, et al. (February 2013).
21. Leis, Helen, Parie Garg, and Iueh Soh, Right Place, Right Time: Marketplace Responses to the Health Information Needs of Vulnerable Consumers, Oliver-Wyman, Altarum Institute, Robert Wood Johnson Foundation (Jan. 2017).
23. Myriad polls find about a third of people put off care due to cost concerns. See: Riffkin, Rebecca, Cost Still a Barrier Between Americans and Medical Care, Gallup (Nov. 28, 2014)
24. Lee, Emily and Ezekiel Emanuel, “Shared Decision Making to Improve Care and Reduce Costs,” New England Journal of Medicine, Vol. 368 (Jan. 2013).
26. Lynch, Wendy, Kristen Perosino, and Michael Slover (Spring 2014).
27. Lee, Clara et al., “Development of Instruments to Measure the Quality of Breast Cancer Treatment Decisions,” Health Expectations, Vol. 13 (2010).
29. Wennberg, David, et al., “A Randomized Trial of a Telephone Care-Management Strategy,” New England Journal of Medicine, Vol. 363 (September 2010).
30. Mulley, Albert, Chris Trimble, and Glyn Elwyn, “Stop the Silent Misdiagnosis: Patients’ Preference Matter,” BMJ, Vol. 345 (2012).
32. Lynch, Wendy, and Christina Ciucci, Altarum Comparison of Physician and Consumer Health Care Opinions, Altarum Institute (Sept. 20, 2012).
33. Leis, Helen, Parie Garg, and Iueh Soh, Right Place, Right Time: Marketplace Responses to the Health Information Needs of Vulnerable Consumers, Oliver-Wyman, Altarum Institute, Robert Wood Johnson Foundation (January 2017).
34. Yegian, Jill, et al. (February 2013).
35. Health Care Price Transparency: Meaningful Price Information Is Difficult for Consumers to Obtain Prior to Receiving Care, U.S. Government Accountability Office (September 2011).
36. Yegian, Jill, et al. (February 2013).
37. Légaré, France, and Holly Witteman, “Shared Decision Making: Examining Key Elements and Barriers To Adoption Into Routine Clinical Practice,” Health Affairs, Vol. 32, No. 2 (February 2013).
38. Wennberg, David, et al., “A Randomized Trial of a Telephone Care-Management Strategy,” New England Journal of Medicine, Vol. 363 (September 2010).
39. Hibbard, Judith and Helen Gilburt, Supporting People To Manage Their Health: An Introduction To Patient Activation, The King’s Fund (May 2014).
40. Carman, Kristin, et al., “Patient And Family Engagement: A Framework For Understanding the Elements and Developing Interventions and Policies,” Health Affairs, Vol. 32, No. 2 (February 2013).
41. How to Display Comparative Information That People Can Understand and Use, Robert Wood Johnson Foundation (July 2010).