In Search of A Smart Approach to

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1 In Search of A Smart Approach to Big Health Care Data ARM 2014 June 10, 2014 David Newman Executive Director Health Care Cost Institute

2 Health Care Cost Institute (HCCI) HCCI is a non-profit, independent, non-partisan research institute dedicated to creating the United States most comprehensive source of information on health care activity and promoting research on the drivers of health care costs and utilization. Non-profit - incorporated as a 501(c)(3) ()() Public mission - improving US health system by creating comprehensive data infrastructure and analytics Non-partisan - HCCI does not advocate policy Independent - board comprised principally of academic health economists 2

3 Bonafides HCCI has negotiated arrangements to hold almost all of the Aetna, United, and Humana claims data adding other public and private data to this HCCI holds health care claims data on some 50 million Americans, comprehensively from 2007, including those enrolled in Medicare Advantage, employer sponsored, and the individual markets 9 billion claims HCCI has successfully licensed these data to academic researchers 3

Americans, comprehensively from 2007, including those enrolled in Medicare Advantage, employer sponsored,

4 What Does HCCI Do? Annual national cost and utilization reports Annual kids health care reports Academic Research Partnership Program State reform research initiative New national price transparency initiative 4

5 Big Data Big data can be generated in a number of ways: large number of variables for a small number of observations small number of variables for a large number of observations large number of variables for a large number of observations small number of variables on a small number of observations but collected repeatedly over time combining data independently collected 5

number of variables for a large number of observations small number of variables on a small

6 Smart Data Big data can be messy data; Smart data is: linkable files matchable records governed by a common legal infrastructure in-bound out-bound Reduces transaction costs supported by appropriate technology secure research ready or almost research ready Example: unified common encrypted NPIs across data 6

out-bound Reduces transaction costs supported by appropriate technology

7 Rapid Data There are many, and more and more, sources of data, some are smart and some are rapid We distinguish our interests from Rapid Data, such as tweets, Facebook entries, analysis of store transactions, some surveillance efforts, such as some Sentinel data flows, where there is greater interest in timeliness than accuracy * note also less able to design such data feeds they are often taken as given 7

transactions, some surveillance efforts, such as some Sentinel data flows, where there is greater

8 Big Data in Health Care What facilitates big data in health care: large number of people large number of transactions need for payment data initiatives toward comprehensive medical records and machine-read physician notes standardized coding 141,000 ICD-10 codes ~8,000 common procedure codes 8

initiatives toward comprehensive medical records and machine-read

9 Digital Rights Management - 1 DRM aims to control access to information content describe access rights to particular information facilitate t transactions ti of such rights enforce access control Control needs to be comprehensive to prevent leakage or unauthorized use. DRMs received a bad-rap because of how music companies tried to restrict what were viewed as existing rights. While we independently developed our thoughts on DRMs, it is important to acknowledge Viktor Mayer-Schonberger s work, Beyond Copyright: Managing Information Rights with DRM: Denver University Law Review, 2006 which we rely on here. 9

DRMs received a bad-rap because of how music companies tried to restrict what were viewed as existing rights.

10 Understanding Rights - The Empire State Building Land can be owned by one party and building by another. Land or building rents could be pledged d to mortgagee (lender) separating the rights in the asset from rights in any income stream Profits, beyond expenses, could be pledged to other bondholders Lender may have other rights, such as a right to foreclose in the event of a default, or right to maintain Current interest in either the building or land could be held by one party and future interest held by another party Tenants have rights which are separate from the owners right to quiet use and enjoyment Building was controlled by Empire State Building Corporation though a sub-lease, rights granted to it by an entity granted rights by the owner 10

bondholders Lender may have other rights, such as a right to foreclose in the event of a default, or right to maintain Current interest in either the building or land could be held by one

11 Digital Rights Management - 2 While others have focused on how DRMs limit access to digital material (Apple s DRM scheme), the converse what we have focused on, is that a DRM scheme can facilitate authorized transactions, lower costs, and encourage the sharing of greater information. 11

what we have focused on, is that a DRM scheme can facilitate authorized

12 Digital Rights Management - 3 The DRM provides authorization of users controls access authorizes the rights of users controls which digital information is available to which users The DRM enforces the rights granted to it vis-a-vis endusers (for instance noncommercial, nonproprietary, fee based, etc.) The DRM enforces other constraints data must remain statistically deidentified, merges, other value-added activities (groupers, licensed software) 12

vis-a-vis endusers (for instance noncommercial, nonproprietary, fee based, etc.

13 Smart Data in Health Care 13

14 Contact David Newman Executive Director Health Care Cost Institute, Inc G Street NW Suite 720 Washington, DC 14

Healthcare Transparency

Healthcare Transparency David Newman, Ph.D., J.D. Executive Director Health Care Cost Institute March 17, 2015 1 About HCCI HCCI is a non-profit, independent, non-partisan research institute dedicated