Addressing the Concerns of Data Providers --- Lessons from the Private Sector

Persons using assistive technology might not be able to fully access information in this file. For assistance, please send e-mail to: mmwrq@cdc.gov. Type 508 Accommodation and the title of the report in the subject line of e-mail.

Corresponding author: Andrew Kress, Surveillance Data, Inc., 220 W. Germantown Pike, Suite 140, Plymouth Meeting, PA 19462. Telephone: 610-834-0800; Fax: 610-834-8817; E-mail: akress@survdata.com.

Abstract

Introduction: Emphasis on development of syndromic surveillance programs by public health administrators has resulted in proliferation of public-private partnerships for data provision. However, serious concerns arise from these partnerships that require consideration of the motivations and concerns of providers and an understanding of the challenges stemming from working with data from these sources.

Objectives: The paper provides an overview of selected data-source types, concerns relating to partnerships with data providers, and challenges of working with shared data.

Methods: The authors conducted a study based on their experience in working with private-sector data providers, of different data types and provider partnerships. The study focused on the benefits of working with data providers, concerns and motivations of data providers, reasons for participating in data-sharing partnerships, and technical and legal problems of data sharing.

Results: Benefits of working with data providers include substantial-sized samples, broad geographic coverage, timeliness of data, and passive data collection. Problems arising from working with data providers include complexity of data extraction, need to protect patient privacy and confidentiality, resource requirements, limited financial benefits, concerns about public opinion, and duplicative data requests. Reasons for provider participation include commercial benefit, limited resource requirements, and corporate goodwill. Other challenges for data recipients include data processing, quality control, storage requirements, and lack of available, proven analytic techniques for data interpretation.

Conclusions: Substantial sample size, timeliness, and passive collection can be gained by using certain types of data. However, to attain these advantages, end-users should be prepared to address the concerns of data providers and cope with the methodologic and technical complexities involved in undertaking such partnerships (Figure).

Use of trade names and commercial sources is for identification only and does not imply endorsement by the U.S. Department of Health and Human Services.

References to non-CDC sites on the Internet are provided as a service to MMWR readers and do not constitute or imply endorsement of these organizations or their programs by CDC or the U.S. Department of Health and Human Services. CDC is not responsible for the content of pages found at these sites. URL addresses listed in MMWR were current as of the date of publication.

Disclaimer All MMWR HTML versions of articles are electronic conversions from ASCII text into HTML. This conversion may have resulted in character translation or format errors in the HTML version. Users should not rely on this HTML document, but are referred to the electronic PDF version and/or the original MMWR paper copy for the official text, figures, and tables. An original paper copy of this issue can be obtained from the Superintendent of Documents, U.S. Government Printing Office (GPO), Washington, DC 20402-9371; telephone: (202) 512-1800. Contact GPO for current prices.