A proposed federal rule on implementation of the 21st Century Cures Act includes opportunities to support patients’ access to their electronic health information and improve the transparency of health care price information. Based on what we have learned from our work in our Empowering Health Care Consumers program area, NYHealth submitted the following comments to encourage policy-makers to ensure that useful health care information is easily available to patients. 

May 2, 2019

The Honorable Alex Azar
U.S. Department of Health and Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201

Re: 84 FR 7424

Dear Secretary Azar:

On behalf of the New York Health Foundation (NYHealth), a private, independent philanthropy, I am writing to provide comments to the Notice of Proposed Rulemaking (84 FR 7424) 21st Century Cures Act: Interoperability, Information Blocking, and the ONC Health IT Certification Program published in the Federal Register on March 4, 2019.

NYHealth believes that information transparency is a gateway to improving affordability, quality, and competition in the health care system and making the system work better for all Americans. One of our priority areas, Empowering Health Care Consumers, is focused on promoting transparency of health care price, quality, and patient experience information. We support projects to develop and spread information resources for patients and encourage diverse stakeholders (including plans, providers, and policymakers) to advance transparency in health care.

A national survey by Public Agenda, co-funded by NYHealth and the Robert Wood Johnson Foundation, found that the majority of Americans are searching for price information in health care. Even among those who had never looked for price information, the majority indicated that they want to know how much a medical service will cost them before receiving the service; they simply do not know where to look. The survey also found that nearly two-thirds of Americans don’t believe that there is enough price information about how much medical services cost. These findings dispel misconceptions that people are not interested in this information.[1]

We applaud the Administration’s efforts to promote meaningful price and information transparency in the health care system. Our experience and the work of our grantees on this topic provide important lessons:

  • Making timely information on prices easily accessible in consumers’ electronic health information (EHI) systems and having actual price information (rather than chargemaster data) available on public websites will help empower patients to be effective consumers of health care.
  • Leadership and direction by the federal government, especially the Office of the National Coordinator (ONC), is needed to motivate and direct participation by all stakeholders required for such meaningful price transparency to occur.
  • Patients should have easy access to notes written by their providers—and patients want them. OpenNotes, a global leader in the note-sharing movement, has found that more than 90% of patients want easy access to their health care visit notes.[2] Patients, parents, and care partners report many important clinical benefits from reading shared notes, including better understanding of their health conditions, improved adherence to medications and their care plans, and increased trust of doctors.

Below, we respond to the Department’s specific requests for feedback in the proposed rule:

HHS question: Should prices that are included in EHI reflect the amount to be charged to and paid for by the patient’s health plan (if the patient is insured) and the amount to be charged to and collected from the patient (as permitted by the provider’s agreement with the patient’s health plan), including for drugs or medical devices; include various pricing information such as charge master price, negotiated prices, pricing based on CPT codes or DRGs, bundled prices, and price to payer; be reasonably available in advance and at the point of sale; reflect all out-of-pocket costs such as deductibles, copayments and coinsurance (for insured  patients); and/or include a reference price as a comparison tool such as the Medicare rate and, if so, what is the most meaningful reference? 

Meaningful information on prices faced by consumers needs to be available in advance of the point of care. Patients should have access to the estimated prices that they will be responsible for paying (including deductibles, copayments, and coinsurance if they are insured), and they should have that information before the service, drug, or medical equipment is provided. The U.S. Government Accountability Office (GAO) issued a report on meaningful price transparency that defined price as an estimate that (1) reflects negotiated discounts; (2) is inclusive of all costs to the consumer associated with a service or services, including hospital, physician, and lab fees; and (3) identifies the consumer’s out-of-pocket costs.[3]

In nearly every other sector of the economy, people know what they are paying for, and how much, before they pay. Such a priori knowledge could empower patients to seek care from more efficient providers. Without such information, patients have no ability to comparison-shop for the highest-value care.

Good faith estimates are useful. Given the complexity of health insurance plan benefit designs, exact price information may not be easily generated in a constant real-time (or on-demand) basis. In such cases, good faith estimates may be required. Such estimates should be automatically and seamlessly updated as patients’ histories of benefit utilization and network information changes.

Patients should receive an “all-in” price. It is much more meaningful for consumers to see the “all-in” price for a health care event or episode (for example, having a baby) than to see a confusing array of prices for isolated procedures related to the episode (for example, the price of an anesthesiologist or a lactation consultation). The federal government, as well as many commercial insurers and states, has invested considerably in the development of episode groupers, as well as new payment and delivery models geared toward specific episodes and conditions.[4] Sharing this information with consumers as part of transparency tools would be an enormous step forward. Having an “all-in” price would also help limit the occurrence of surprise bills. Without information about the prices for all services involved in an episode of care, surprise bills may occur even after a patient has taken steps to ensure that the providers involved in their care would be in-network and covered by their insurance plan.

Some services, episodes, drugs, and devices are more conducive to price-shopping than others. Not every health care service is shoppable; in an emergency, no patient is in a position to act like a consumer and comparison-shop. But low-risk acute care services like common imaging and lab tests are often delivered at different sites of care (e.g., physician offices, urgent care centers, and emergency rooms) with fairly uniform quality; these services offer the most obvious opportunities for price-shopping. Expensive and well-defined procedural episodes of care that can be planned for well in advance (e.g., knee replacement) also represent important opportunities to help steer patients to more efficient providers. ONC should prioritize price transparency efforts on the types of care that are most conducive to price-shopping.

Reference prices should be relevant to a patient’s specific circumstances. For example, prices should be relevant to the networks and benefits available to a particular patient. Insured patients should be able to see price information relevant to the specific network of providers available to them, as opposed to all providers within their geographic area. Providing the median price available within the network can be a useful starting point for patients. They can use this reference point to get a sense of whether what they are being charged at a specific provider is higher, lower, or on par with alternative options.

HHS question: Should price information be made available on public websites so that patients can shop for care without having to contact individual providers, and if so, who should be responsible for posting such information?

Making prices transparent on public websites can ensure that all consumers have the information they need. Navigating the health care system is challenging and time-consuming; consumers should have access to up-to-date, accurate, user-friendly information that allows them to compare prices and make informed decisions about where to get their care. Centralizing this information and making it publicly available so that patients are not required to contact multiple providers to compare price information would be a welcome step.

Federal and State leadership is required. Meaningful price transparency requires substantial commitment by providers and payers. Not only will they need to dedicate resources to develop and maintain new processes for information dissemination, but they may also be required to collaborate with each other in ways that are unfamiliar. Moreover, payers and providers that have negotiated favorable price levels may not have strong incentives to reveal prices. Some providers and payers may have even negotiated contractual restrictions prohibiting such action.

Involvement by federal and State regulators is necessary to help overcome such operational, contractual, and regulatory barriers. The federal government, particularly ONC, is uniquely positioned to establish and support the interoperability of price information across payer, provider, and patient electronic health information systems. This kind of interoperability would likely be required to seamlessly make available the actual prices faced by consumers.

States are also well-positioned to be leaders in transparency efforts. States have relevant legal authority over a substantial portion of commercial insurance plans operating in their states and Medicaid. They can manage the collection of data, as well as the processes needed to ensure the credibility of the information provided. Some of these efforts can build on resources states already manage for other purposes that use similar data, such as the All-Payer Databases that are being developed in several states, including in New York.

Federal and State involvement will build public trust and awareness. Research shows that health care consumers are skeptical of data that come from a source that has a financial or other interest in providing the information, and may view it as an advertising pitch instead of impartial education.[5] Government actions are less likely to be tainted by these conflicts, whether real or perceived.

Importantly, such participation by government regulators would be welcomed by the general public. A survey conducted by Public Agenda found that 80% of Americans think that it is important for their State governments to provide people with information that allows them to compare prices before getting care.[6]

HHS proposal: Specifically, we propose to include the following clinical note types for both inpatient and outpatient (primary care, emergency department, etc.) settings in USCDI v1 as a minimum standard: (1) Discharge Summary note; (2) History & Physical; (3) Progress Note; (4) Consultation Note; (5) Imaging Narrative; (6) Laboratory Report Narrative; (7) Pathology Report Narrative; and (8) Procedures Note. We seek comment on whether to include additional note types as part of the USCDI v1.

The HHS proposal is comprehensive, and we affirm the need to include clinical notes in an expanded set of data that must be exchanged electronically and made easily accessible to patients. NYHealth has supported the implementation of OpenNotes, an international movement to give patients access to their own clinical notes written by their doctors, nurses, or other clinicians, in hospitals across New York State and is poised to expand the program in federally qualified health centers and other non-hospital provider settings. Research has shown that easy access to patient notes brings substantial benefits for both patients and clinicians.[7] Patients who do read their notes have reported that they feel more in control of their health care, have better medication adherence, and trust their doctors more.

As you consider comments on your proposed rules, priority should be placed on making genuinely useful information easily available to patients. Americans across the country are concerned about health care affordability and they want to know what their care is going to cost them, before they receive a service. HHS’s leadership can increase the availability and utility of this information. As you move forward with transparency efforts, it is essential to have patient and consumer advocates directly at the table. This representation will provide vital feedback on ways to develop and tailor tools and resources that are genuinely responsive to consumer needs.

Thank you for the opportunity to provide input on this important matter.

Respectfully submitted,

David Sandman, Ph.D.
President and CEO
New York Health Foundation


[1] Public Agenda, “Still Searching: How People Use Health Care Price Information in the United States,” April 2017. https://www.publicagenda.org/pages/still-searching, accessed April 2019.

[2] Bell SK, Gerard M, Fossa A, et al “A patient feedback reporting tool for OpenNotes: implications for patient-clinician safety and quality partnerships.” March 2017. https://qualitysafety.bmj.com/content/26/4/312, accessed April 2019.

[3]  U.S. Government Accountability Office. Health Care Transparency: Meaningful Price Information Is Difficult for Consumers to Obtain Prior to Receiving Care, September 2011. https://www.gao.gov/assets/590/585400.pdf, accessed April 2019.

[4] Examples of episode groupers used by CMS and commercial payers include: Centers for Medicare & Medicaid Services, “Bundled Payments for Care Improvement (BPCI) Initiative: General Information.” Available at:  https://innovation.cms.gov/initiatives/bundled-payments/; Optum Insight, “Symmetry Episode Treatment Groups.” Available at: https://tinyurl.com/y2vg3sp8; Prometheus Analytics, “The Episode.” Available at: http://prometheusanalytics.net/deeper-dive/episode.

[5] De Brantes, F., Delbanco, S., Butto, E., Patino-Mazmanian, K., and Tessitore, L. 2017. Price Tansprancey & Physcian Quality Report Card 2017. Available as of March 16, 2018 at: https://www.catalyze.org/wp-content/uploads/2017/11/Price-Transparency-and-Physician-Quality-Report-Card-2017_0-1.pdf.

[6] Public Agenda, “Still Searching: How People Use Health Care Price Information in the United States,” April 2017. https://www.publicagenda.org/pages/still-searching, accessed April 2019.

[7] Mishra,V., Hoyt, R., Wolver,S., Yoshihashi, A., Banas, C. 2019. Qualitative and Quantitative Analysis of Patients’ Perceptions of the Patient Portal Experience with OpenNotes. https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0038-1676588, accessed April 2019.

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