Do Health Data and Metadata Ownership Licenses Help or Hurt Innovation? Dennis D. McDonald, Ph.D. 0
Do Health Data and Metadata Ownership Licenses Help or Hurt Innovation? By Dennis D. McDonald, Ph.D. June 3, 2016 One of the things I didn't hear discussed much at the recent Health Datapalooza conference in Washington DC was how data ownership and licensing might sometimes create roadblocks to how innovative data products and services based on shared data are developed. I thought of this recently while researching health data governance issues. One of the web sites I visited is operated by CGS. Upon going to the CGS web address the following "licenses and no- tices" window is displayed:
The full text of the window is displayed in the Addendum at the end of this article. What gave me pause about going deeper was this statement at the end: The license granted herein is expressly conditioned upon your acceptance of all terms and condi- tions contained in this agreement. If the foregoing terms and conditions are acceptable to you, please indicate your agreement by clicking below on the button labeled “I ACCEPT”. If you do not agree to the terms and conditions, you may not access or use the software. Instead, you must click below on the button labeled “I DO NOT ACCEPT” and exit from this computer screen.
I was not sure what to do about this. What it seemed to be saying was, "If you want to learn more about what our company does, be prepared to experience unknown consequences!" OK, I'm being a bit snarky here. But my interest is sincere. Some recent CMS1 related consult- ing regarding data governance provided me with some insights into the complexities of how data are governed and exchanged on a daily basis via systems involved in administering the Afforda- ble Care Act. Also, given the technical and institutional challenges discussed at Health Datapa- looza (which I'll discuss in more detail in a future blog post) I would think that the types of li- censing and software ownership and liability issues raised in the above "online shrink-wrap" li- censing agreement should be receiving serious attention as well. Don't get me wrong. I'm not proposing that the ownership and liability statements put forth in this window on behalf of the American Medical Association and the American Dental Associa- tion should be ignored. I cut my professional teeth on researching and analyzing the intellectual property management challenges posed by new media, and I've negotiated software and data- base publishing licensing agreements. I take intellectual property and ownership rights quite seriously. What I see in the above "accept it or go away" statement, though is a possible failure to recog- nize that traditional concepts of ownership and licensing can also act as barriers to developing innovative new products and services from shared health data. We see how the current web of licensing agreements is hobbling cable TV operators as they find themselves having to compete more and more with web based streaming services. Isn't it also possible that similar restrictions regarding health data and metadata might provide similar challenges to creating new and beneficial products and services from shared data? That may sound a bit extreme, but as its stands now, I am reluctant to click on the above "ac- cept" button. All I really want to do is to find out more about what this company does -- but I don't want to hire an attorney to help me decide what liability I might be exposing myself to as an independent consultant if I click "accept"! Related reading: Dashboarding Open Data Program Governance Data Standards and Data Dictionaries Need Data Governance Needed: Better Integration of Project Management and Data Management Observations and Questions about Open Data Program Governance Regarding Big Data One Manager's "Resistance" Is Another Manager's "Caution" Should Clinical Trial Data Sharing Be a Precondition for Refereed Journal Article Ac- ceptance?
1 Centers for Medicare and Medicaid Services
Should We Be Able to Buy and Sell our Personal Financial and Medical Data? Should your child's vaccination history be a matter of public record? Ten Questions for People Who Manage Large Data Intensive Projects Transparency Is Not An End In Itself Copyright (c) 2016 by Dennis D. McDonald. Dennis (email ddmcd@out- look.com phone 703-402-7382) is based in Alexandria, Virginia. His ex- perience includes consulting company ownership and management, PMO setup and management, database publishing and data transformation, managing the integration of large systems and databases, corporate tech- nology strategy, social media adoption, statistical research, and IT cost analysis. His clients have included the Centers for Medicare and Medicaid Services (CMS), U.S. Department of Veterans Affairs, the U.S. Environ- mental Protection Agency, the National Academy of Engineering, General Electric, AIG, the World Bank, Whirlpool, and the National Library of Medi- cine. He has worked as a project manager, analyst, and researcher throughout the U.S. and in Europe, Egypt, and Hong Kong. His profes- sional web site is here: http://www.ddmcd.com. BEGIN ADDENDUM The following text was copied from the popup window displayed on the web site at address http://www.cgsmedicare.com/ on Friday, June 3, 2016: License for Use of "Physicians' Current Procedural Terminology", (CPT) Fourth Edition End User/Point and Click Agreement: CPT codes, descriptions and other data only are copyright 2009 American Medical Association (AMA). All Rights Reserved (or such other date of publication of CPT). CPT is a trademark of the AMA. You, your employees and agents are authorized to use CPT only as contained in the following authorized materials including but not limited to CGS fee schedules, general communications, Medicare Bulletin, and related materials internally within your organization within the United States for the sole use by yourself, employees, and agents. Use is limited to use in Medicare, Medicaid, or other programs admin- istered by the Centers for Medicare & Medicaid Services (CMS). You agree to take all necessary steps to insure that your employees and agents abide by the terms of this agreement. Any use not authorized herein is prohibited, including by way of illustration and not by way of limita- tion, making copies of CPT for resale and/or license, transferring copies of CPT to any party not bound by this agreement, creating any modified or derivative work of CPT, or making any commercial use of CPT. License to use CPT for any use not authorized here in must be obtained through the AMA, CPT In- tellectual Property Services, 515 N. State Street, Chicago, IL 60610. Applications are available at the AMA website External Website. This product includes CPT which is commercial technical data and/or computer data bases and/or com- mercial computer software and/or commercial computer software documentation, as applicable which were developed exclusively at private expense by the American Medical Association, 515 North State Street, Chicago, Illinois, 60610. U.S. Government rights to use, modify, reproduce, release, perform, dis- play, or disclose these technical data and/or computer data bases and/or computer software and/or computer software documentation are subject to the limited rights restrictions of DFARS 252.227- 7015(b)(2)(June 1995) and/or subject to the restrictions of DFARS 227.7202-1(a)(June 1995) and DFARS 227.7202-3(a)June 1995), as applicable for U.S. Department of Defense procurements and the limited rights restrictions of FAR 52.227-14 (June 1987) and/or subject to the restricted rights provisions of FAR
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