What price is correct for transparency?

As noted previously, the Massachusetts legislature has entrusted the handling of the all-payer claims database (APCD) to a new independent state agency, CHIA (Center for Health Information and Analysis) which has issued proposed regulations concerning the availability of the data.  Among the issues CHIA had to decide was what fee, if any, to charge for access to the data and the terms under which someone can request a waiver. Those regulations are here.  Here is an excerpt:

The proposed fees reflect the cost of systems analysis, program development, computer production, vendors’ fees, consulting services and other costs related to the production of any requested data. The proposed fees are based upon four factors: (1) the type applicant requesting the data; (2) the type and number of data files requested; (3)the data elements requested; and (4) the number of years of data requested.  The Center may reduce or waive the applicable fees for qualified applicants. 

The Massachusetts Hospital Association recently filed complaints about some aspects of those regulations:

When CHIA released its initial proposed APCD fee schedule in November 2012, a mid-size organization, such as a community hospital, would have had to pay as much as $39,375 for just one year of restricted data, which would be insufficient to study trends and analyze the impact of any interventions over time. Such a hospital would have to pay multiple times for the data it needs. Under CHIA’s new fee schedule, released this month, a provider organization requesting restricted data from all categories would have to pay $40,500. And while the proposed new fees were reduced for obtaining public, de-identified data, it would still cost a provider organization up to $15,000 for a single year/single use.

“MHA appreciates that CHIA significantly reduced the fees for researchers,” MHA’s Sr. Dir. of Managed Care Karen Granoff wrote in testimony in response to CHIA’s fee schedule. “Like researchers, providers have a legitimate need to access the data for all of the purposes outlined in Chapter 224, yet unless CHIA adjusts the fees and makes them more reasonable, it is unlikely that many providers will be able to take advantage of this resource.”

Granoff noted that APCD costs in neighboring New England states are significantly lower and she noted that hospitals already pay an assessment to fund CHIA’s budget.

“The proposed fees will discourage use of the data by providers at the same time that the state is trying to promote the use of transparency around care delivery and to encourage care coordination and a transition to population-based care delivery,” Granoff wrote. “It would be an unintended consequence if the Commonwealth’s multi-year, ambitious effort to control healthcare costs were to fail due to barriers to data access set up by the agency itself.”

I asked CHIA Commissioner Áron Boros if he would like to use this forum to respond to the MHA comments, and he kindly did so: 

As we consider adjustment to the fee schedule in light of the comments we received, we are conscious of CHIA's competing responsibilities: to defray the operational costs of the APCD while also maximizing its value by facilitating access to many diverse users. 

Over my term at CHIA, I am committed to continuously expanding the use of our data resources. Novel uses of public assets like the APCD hold the promise of accelerating improvements in cost and quality in Massachusetts. Fees are necessary part of the investment needed to support this future, but I welcome all thoughts on how to ensure such fees are appropriate.

Having served in fee-based agencies, I am acutely aware of the trade-offs facing CHA.  If it incurs direct costs in serving requests for data and does not have a state appropriation to pay those direct costs, the fees it charges must be compensatory for the work needed to satisfy the requests.  To the extent it waives fees, it would be required to add those amounts to the fees paid by others.  If there is a broad public interest--as here--in making data broadly available to those with insufficient resources to pay the direct costs, it turns to the Legislature and Governor to make those funds available.

In this instance, though, perhaps the rules could be read to mean that the MHA--a voluntary, not-for-profit organization with a strong emphasis on education programs--could make a single request on behalf of a group of hospitals who would share the data, reducing the cost for any one institution.