Monday, August 29, 2011

Free up the data, Commissioner

The Governor of Massachusetts has made an excellent choice for the new Commissioner of the Division of Health Care Finance and Policy.  He is attorney Áron Boros, who comes to DHCFP after serving as director of federal finance for the state’s Medicaid office since 2008.  Prior to working for MassHealth, Boros was an associate at the Boston law firm Foley Hoag LLP, where he worked with health care clients on a wide variety of issues.  His work included initiatives related to chronic disease management, health information technology, and evidence-based medicine.  His first day at DHCFP will be Sept. 15.

Let's hope that Mr. Boros makes good on the promises of his predecessor.  Under state legislation, the DHCFP has been assembling an all-payer claims database (APCD). It comprises medical claims, dental claims, pharmacy claims, and information from member eligibility files, provider files, and product files. It includes fully-insured, self-insured, Medicare, and Medicaid data and clear definitions of insurance coverage (covered services, group size, premiums, co-pays, deductibles) and carrier-supplied provider directories.

The existence of this database offers the potential for all parties to study the actual transactions taking place in the Massachusetts health care system.  It permits testing of hypotheses with regard to payment models, clinical affiliations, and a variety of other pertinent matters with regard to the state's health care policy agenda.  Because Massachusetts took the national lead with regard to health care reform, it also offers potential value to the country as a whole.

But transparency only works if the data are made available to all and easily so.  The previous commissioner made this promise over a year ago:  "That the database would be widely accessible, so that independent researchers, policy analysts, advocates, market participants, and others would be able to manipulate it to test hypotheses and assumptions."

Here is what the current regulations (114.5 CMR 22.00: Health Care Claims Data Release) say about getting this data:

22.03: Procedures for Data Requests
(1) Public and Restricted Use Files. The Division will create Claims Data Public Use Files and Restricted Use Files to which Applicants may request access in accordance with 114.5 CMR 22.03(2).

(2) Application Review Procedures. 

(a) Applications for Data.
1. All Applicants must submit a written application. Each Applicant shall:
a. specify the data requested, including Public Use Files and any restricted data elements requested; 
b. specify the purpose and intended use of the data requested, including a detailed project description that describes any other data sources to be used for the project;
c. specify security and privacy measures that will be taken in order to safeguard patient privacy and to prevent unauthorized access to or use of such data; 
d. specify the Applicant's methodology for maintaining data integrity and accuracy;
e. describe how the results of the Applicant’s analysis will be published;
f. agree to provide the results of all analyses, research, or other product of the data requested to the Division for the Division’s own use;
g. agree to the data disclosure restrictions in 114.5 CMR 22.04; and 
h. obtain prior approval from the Division to release any reports that used restricted use files prior to publication or other release.

Obviously, protection of patient privacy is important and required by statute, but several of the other requirements here are not.  Truly, this is "old style" government.  Say I am an academic researcher, exploring multiple hypotheses related to payments or clinical care management.  Why should I have to tell the state what other data sources I plan to use?  Why should I describe how the results will be published?  (Indeed, I probably cannot, in that my work may have to go through levels of peer review at multiple journals.)  For public use files, rather than restricted files, why should there be a need for any application at all?  I fear that these requirements act as an effective bar on public inquiry, well beyond that intended by the Legislature.

But maybe I am over-reacting.  I would love to be proven wrong.  Here's a test to see whether my concerns are valid.  This is the most comprehensive data set in the state on this topic, in a state filled with public policy researchers at multiple academic institutions and NGOs.  How many applications for data have been received since the regulations were adopted in July of 2010?  How many have been approved?  For the ones not approved, what reasons were given?


e-Patient Dave said...

Absolutely right! It's no transparency at all if hurdles are put in the way. For heaven's sake, how much use would people make of NOAA weather data if comparable hurdles and approval were required?

Look at this cost curve from the Kaiser Family Foundation. The situation is desperate. We need to HELP smart minds solve this. Please, Commissioner - free the data.

Barbra G. Rabson said...

Agree! Massachusetts will have a powerful new tool available for examining utilization, cost and quality when the Division of Health Care Finance and Policy completes development of a new All-Payer Claims Database (APCD). We need to be sure that we balance the time and energy being expended on how to restrict access to the APCD with a focus on how to utilize the APCD to equip our delivery system with information needed to improve the understanding of how care is delivered and how it could be improved.

Local, coordinated action will be needed to: 1) map variations in the ways different groups of physicians manage conditions that are drivers of cost and quality; 2) identify specific services responsible for differences in cost; 3) engage clinicians in examining practices that may be ineffective, inefficient, or wasteful; 4) design and implement infrastructure, organizational, and practice improvements; and 5) use results to drive continuous improvement.

Since its inception, MHQP has earned the trust and support of the state's medical community by involving physicians in its measurement and reporting process. As the APCD nears completion, MHQP offers an unbiased, neutral mechanism through which all of the key health care stakeholders – physicians, hospitals, health plans, employers, and consumers – can be engaged in making sure the data is transparent and actionable. Specifically, with access to APCD data, MHQP would be able to:
 Engage health plans, providers, payers and patients in a collaborative process to establish priorities for practice pattern variation analysis.
 Adopt an analytic model developed and tested by BCBSMA to standardize comparative data across all health plans using the APCD.
 Use its existing relationships and infrastructure to share variation analysis with physician organizations.
 Lead a collaborative process for setting performance standards for targeted conditions based on evidence-based guidelines and focused on eliminating unnecessary variation.
 Help providers analyze the business case for improvements and find the most cost-effective approaches to changing practice patterns.
 Equip patients to become active participants in shifting the health care system toward value.
 Monitor the impact of changes on the patient experience.

An approach that identifies specific unnecessary practices and then engages physicians in changing them offers an excellent, immediate opportunity to address the urgent need to make Massachusetts health care more affordable.

Lynn Nicholas, MHA said...

You're so right about the potential benefit of the APCD – it's a key tool to foster delivery system reform and it can even be useful to target improvements to care management in a fee-for-service environment. In fact, many experts predict that without ready and timely access to the sort of information contained in the database that even planning for a transition will be stymied – so we're as anxious as you are about access to this information.

But the existing regulations outlining the APCD's use seem to present a stance that the state "owns" the data and that by tightly controlling it, the state can somehow protect the public. As an example, under the regulations applicants for data must agree to provide the results of their analyses and research to the Division for the Division's own use. Does that mean you have to turn over all work products, or is the intent more circumscribed? Can an applicant declare certain aspects of the results confidential and, therefore, not subject to public disclosure by the Division? Just how does DHCFP's "editorial" control go?

Also it appears that applicants will have to prove that their need for data is in the "public interest". Does using data to construct a global payment model or a bundle of care hold the same public interest as a researcher writing a paper on healthcare usage by certain populations? Is government use of the data for regulatory purposes the same as private sector use for market purposes?

Who makes these decisions? While the regulations provide for the creation of a "Data Release Committee" of providers, insurers and consumers, the final say on who gets the data rests with the DHCFP commissioner. And there's no appeal process if a data request is denied.

This is a great time for a new paradigm shift from paternalism to partnership. This data does not belong solely to the state. It does belong to patients, providers, employers, and payers -- the very parties involved in its creation.

Accordingly, the best way to oversee the use of this valuable resource is through a shared governance process.

The statutory authorization should be changed to establish that all APCD regulatory provisions, including the release and use of APCD data, be subject to approval by a shared governance entity comprised of majority representation from the provider, payer, employer and consumer communities, and also include representatives from state government. There are also other NGOs that have good expertise in this area that should be heard.

Their guiding principle should be: Timely release information unless there is clear and convincing evidence that such release would run contrary to laws that protect privacy and patient confidentiality. And revisit DHCFP's intent to require all users of APCD information to make their reports and conclusions available to the agency. Because having some sort of government "tribunal" mandate submission of an independently produced work product derived from public information seems a bit chilling and excessive to me.

Paul Levy said...

All of you have put it much better than I. Thanks.