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U.S. Healthcare Transparency Data. Supplemental data for the CMS/HHS price transparency rules.

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Transparency Data

This is a data repository for transparency related data in healthcare, produced and maintained by Persius.

The goal of this resource is to provide easily accessible data related to the existence, practices and costs of hospitals and health insurance issuers in the United States. Our hope is that with enough data, U.S. consumers, advocacy groups, and other third parties will be empowered to end unjust practices in healthcare, drive costs down, and work towards equitable, accessible government-managed care for all. At the least, we hope that enough easily accessible data will ensure the worst abusers of our systems are recognized and held responsible by the people.

Contents

Price Transparency

Under the Affordable Care Act (ACA), the Centers for Medicare and Medicaid Services (CMS) and the Department of Health and Human Services (HHS) have produced and implemented rules and regulations aimed at providing transparent access to pricing data across U.S. healthcare. There are many exciting developments in the scope and implications of these rules that are coming to fruition right now.

This repository is meant to serve as a supplement to the raw data that the transparency rules require organizations to serve to the public, and the consumer facing websites and resources provided by CMS and HHS. In particular, there are certain problems with the current implementations of these rules that leave gaps and pose barriers to effective use of the transparency data by the general public, and we hope to fill those gaps and lower those barriers.

Hospitals

The rules implemented by CMS and HHS pertaining to hospitals require hospitals to provide public facing pricing data for certain standard charges and services. In short, each hospital must serve a file online, accessible by the public, that details a menu (with prices) for some of the services they provide. They also must honor (to an extent :/) the prices listed in that file. The file is referred to as a Machine Readable File (MRF). Price transparency of hospital standard charges rules are defined in CMS rule CMS-1717-F2 (originally published 11/15/2019). The final rules went into effect on 1/1/2021.

You can read about these Hospital Price Transparency rules in the following locations:

CMS also maintains a consumer facing webpage about the rules.

Machine Readable Files

We maintain a centralized source of truth for the urls of publicly accessible MRFs for hospitals in the U.S. This data can be viewed in price_transparency/hospitals/machine_readable_links.csv, and you can read about the schema of that file in price_transparency/hospitals/README.md.

Here is an example of the data in this file:

ccn reporting_entity_name_legal reporting_entity_name_common reporting_entity_type machine_readable_url machine_readable_url_status machine_readable_page supplemental_url file_name file_format file_size meets_standard standard_issue state_or_region last_updated_date entry_date notes
390046 WellSpan York Hospital hospital https://www.wellspan.org/media/2659837/231352222_york-hospital_standardcharges.json up https://www.wellspan.org/patients-visitors/patient-guide/billing-insurance/cost-of-care/ 231352222_york-hospital_standardcharges.json json PA 2022-10-29
050174 Providence Santa Rosa Memorial Hospital hospital https://www.providence.org/-/media/project/psjh/shared/files/pricing/phs/json/81-4791043_santa-rosa-memorial-hospital_standardcharges.json up https://www.providence.org/obp/norcal/pricing-transparency https://www.providence.org/ 81-4791043_santa-rosa-memorial-hospital_standardcharges.json json 23182650 CA 2022-08-03 2022-11-26

Why collect MRF references?
To get utility from the machine readable files provided by hospitals, one has to know they exist, and where to find them. If one knows in advance that they only care about one particular hospital, it is relatively straightforward to do some searching online to discover the location of the relevant file (assuming the hospital is in compliance). However, this sort of use case is, in our opinion, one where the transparency file has relatively limited utility. Knowing prices in advance is useful for many reasons, but one of the most promising reasons is because it allows consumers to _compare_ prices across providers, and proactively choose their provider based on prices (i.e. to "shop around").

This latter sort of use case is less straightforward given the current rule implementation, because there is no centralized, government-run website that maintains a list of all hospitals' transparency files. This means that to "shop around", a consumer has to compile a list of hospitals they are considering, perform a search to find the MRF for each one, and then open each of those files and cross reference between them.

Having the urls for all such files in one location would be invaluable to consumers, and third parties building tools to support consumers, since it would allow people or software to easily download and compare many files, and aggregate the pricing findings in one location, all from one source. There are plenty of companies doing this aggregation themselves, keeping the aggregate lists proprietary, and selling the aggregated info back to consumers and healthcare professionals. This is better than nothing, but the fact that these companies are not open sourcing the MRF urls they collect goes against the entire intention of the rules, which are meant to provide clear and easy access directly to consumers, for free. These existing for-profit efforts contribute more costs to our systems by adding more stockholders looking for profits from the very data that was meant to allow consumers to spend less, and make our systems more broadly accessible and efficient. Since we as consumers pay taxes to fund all of the work CMS and HHS do, it is reasonable to consider the MRFs and other transparency data that providers are being required to submit as belonging to us, the people, and we should work to ensure it exists in it's full glory outside proprietary silos that drive all of our costs up.

Note: While there is no centralized, government-run site that includes a list of all MRF urls, there is documentation provided by CMS about what form the file names of these MRFs should take, which might prove useful. Namely, in this CMS guide they describe that file name should follow the template: <ein>_<hospital-name>_standardcharges.[json|xml|csv]. If we had a full list of all hospital names and EINs in the U.S., and we could be sure each of them was following this rule strictly, this would be a way for us to obtain all of the MRF file names very easily. If we additionally knew how those files were being served in some consistent manner relative to a list of known hospital owned domains, we could automate the work we seek to accomplish in this subsection. This is an example of how lack of existence transparency data can limit the utility of other data. See Existence Transparency for more details below.

You can read details and structure of the requirements for machine readable pricing files via CMS documentation.


Report Violations

The final rules for hospital price transparency are currently in effect! Since the rules are relatively new and enforcement has so far been limited, it is unclear how many hospitals are in strict compliance. If you observe hospitals who are not adhering to the requirements of the final rule, you should contact CMS directly to report the violation.

Insurance Issuers

Just as there are rules implemented by CMS and HHS requiring pricing transparency from hospitals, there are also rules requiring pricing transparency from health insurers. These rules require group health plans and health insurance issuers to disclose certain pricing and cost-sharing information to the public. In particular, this includes providing cost-sharing information for certain covered services for particular providers, which combined with hospital pricing transparency can be invaluable to consumers trying to understand their out of pocket costs for particular services, at particular facilities, with particular insurance. Insurers must provide this cost information via MRFs. Price transparency rules for health insurers are defined in HHS rule 85 FR 72158 (originally published 11/27/2019). The final rules effectively started on 7/1/2022, after mandatory compliance was delayed from an initial target of the beginning of 2022.

You can read about the transparency rules for insurers in the following locations:

Machine Readable Files

Our goal for insurance pricing transparency is to maintain a centralized source of truth for the urls of publicly accessible MRFs for insurers in the U.S. We do this by providing two forms of data.

The first source of data is a csv that documents the urls at which different insurers provide supplemental information about their compliance with price transparency; these pages often include things like links to all individual MRFs, so serve as a good starting points for scraping MRF data for a given insurers.

This data can be viewed in price_transparency/insurers/machine_readable_homepages.csv, and you can read about the schema of that file in price_transparency/insurers/README.md.

Here is an example of the data in this file:

id reporting_entity_name_legal reporting_entity_name_common reporting_entity_type machine_readable_url machine_readable_url_status machine_readable_page supplemental_url file_name file_format meets_standard standard_issue state_or_region last_updated_date
1 United Healthcare United Healthcare insurer https://transparency-in-coverage.uhc.com up https://transparency-in-coverage.uhc.com https://www.uhc.com/content/dam/uhcdotcom/en/HealthReform/PDF/Provisions/reform-external-transparancy-FAQs.pdf 2022-04-13

The second source of data is (will be) a csv that lists the individual MRFs provided by each insurer. These tend to be obtained by scraping the urls included in the previous data source.

This data can (will be able to be) be viewed in price_transparency/insurers/machine_readable_links.csv, and you can read about the schema of that file in price_transparency/insurers/README.md.

Note: As for hospitals, CMS outlines standard format for the file names for various insurer price transparency files that are required. Check out the CMS technical specification repo here for more details.

Report Violations

The final rules for health plan price transparency are currently in effect! Since the rules are relatively new and enforcement has so far been limited, it is unclear how many health plans are in strict compliance. If you observe health plans who are not adhering to the requirements of the final rule, you should contact CMS directly to report the violation.

Coming soon.

Practices Transparency

Coming soon.

Hospitals

For now, check out the existing CMS tools for comparing hospital practices and ratings.

Insurance Issuers

For now, check out the existing insurer practice transparency data maintained by CMS (see e.g. the "transparency in coverage" puf files).

Existence Transparency

A form of transparency that is implictly required to get the full utility of other forms of transparency is existence transparency. By this we mean data that clearly indicates what the landscape of all existing hospitals, insurers and insurance plans are in the U.S.

There are many partial sources for this sort of data, but, as far as we know, no publicly accessible, centralized, complete, government maintained collection of such data. We'll try to maintain a csv of hospital metadata, insurance issuer metadata, and plan metadata.

Here are some examples of sources that can be used to generate partial or incomplete existence data:

Hospitals

We maintain a flat file describing:

See existence_transparency/hospitals/README.md for a description of the schema used in this file.

Insurance Issuers

We maintain flat files describing:

  1. Insurers we know about: existence_transparency/insurers/insurers.csv.
  2. Their associated issuers: existence_transparency/insurers/issuers.csv.
  3. Their associated plans: existence_transparency/insurers/plans.csv.

See existence_transparency/insurers/README.md for a description of the schemas used in these files.

Contributing

We welcome contributions from all, and feedback and discussion of any form.

Please see .github/CONTRIBUTING.md for more information about how to contribute to this project, or head to the github Discussions tab to join or start a conversation.

Disclaimer

While we aim to provide accurate and up to date information, we provide this data with no warranty or guarantee of its accuracy. We will do the best we can to verify the integrity of data provided here, but you should use it at your own risk, and avoid relying solely on it for critical matters. If you know of any issues or mistakes in this data, please submit an issue or pull request, or contact the maintainers directly via the email listed below.

In particular, if you are a representative of a health insurer, hospital or other provider and seek to correct any of our existing data, or provide information regarding missing data, your contribution is most welcome.

License

Data, Documentation and Other Media

The data, documentation, and media presented in this repository is licensed under Creative Commons Attribution-ShareAlike 4.0 International License.

See LICENSE.CC-BY-SA-4.0 for a full text copy of this license.

Code

All original underlying source code in this repository, including that used to validate data submissions, parse other data sources, and adapt data formats, is licensed under Apache 2.0 License.

See LICENSE for a full text copy of this license.

Please start a discussion thread for any question or concerns related to licensing.

Attribution

If you find this data useful in your work, please consider mentioning it, providing a link, or citing it to help increase our exposure, even if you don't end up using it directly. We'd greatly appreciate that.

In adhering to the attribution clause of the license governing the data, documentation and other media, you can attribute this work as "Persius Transparency Rules Supplemental Data", and share the url: https://github.com/TPAFS/transparency-data

For publications that use this work, please use the following citation:

  @misc{persius2022transparency,
	author ={{Persius Contributors}},
	title={{CMS Transparency Rules Supplemental Data}},
	publisher = {GitHub},
	howpublished={\url{https://github.com/TPAFS/transparency-data}},
	year={2022},
}

Contact

Feel free to reach out to community members, maintainers, or contributors via our discussions space with questions or comments.

Contact [email protected] for private correspondence if that is needed for any reason.

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