17 October 2011

Data Use Agreement Update from BioSense 2.0 Redesign

The BioSense 2.0 Program Redesign is well under way thanks to the hard work and commitment of several individuals and public health associations. The Council of State and Territorial Epidemiologists (CSTE), the Association of State and Territorial Health Officials (ASTHO), the National Association of County and City Health Officials (NACCHO), and the International Society for Disease Surveillance (ISDS), have been working in close collaboration to prepare BioSense 2.0 for the November 15, 2011 roll out. For new information on the model Data Use Agreement for health jurisdictions with regard to data submission and data sharing, please read the latest posting from October 14th from Taha Kass-Hout. 

The body of the post can be found below or at this link to the BioSense community forum: https://sites.google.com/site/biosenseredesign/community-forum/checkinginwiththecommunityonbiosense20. 

Checking in with the community on BioSense 2.0
posted Oct 14, 2011 9:13 AM by Taha Kass-Hout   [ updated Oct 14, 2011 11:44 AM ]

As we get closer to the roll out of BioSense 2.0 on November 15, 2011, I wanted to address some of the concerns and questions that are floating around the community.  The Redesign team and I are very aware of many of the issues jurisdictions are facing and I wanted to bring the community back in the loop on all our efforts to make BioSense 2.0 the most effective system for the user, state and local health jurisdictions.

One of the pieces many jurisdictions are awaiting is the model Data Use Agreement (DUA).  In order to come up with a model DUA, the Redesign team continued to stick with the user centered approach. The Council of State and Territorial Epidemiologists (CSTE), Association of State and Territorial Health Officials (ASTHO), National Association of County and City Health Officials (NACCHO), and International Society for Disease Surveillance (ISDS) were instrumental in collecting input from their membership, reflecting on similar experiences in Distribute and BioSense 1.0, and contributing and commenting on other data sharing models.  After this information collection, all input and advice were shared with a group of lawyers, who not only utilized that information but also spent time having conversations with the various association partners in order to accommodate all concerns and issues.  The lawyers then generated a draft which was vetted by CDC and the associations, and then generated a final draft, which has been vetted with ASTHO and CSTE and is set to be finalized for distribution to jurisdictions next week as part of the recruitment effort.  Jurisdictions will be able to customize the DUA based on their jurisdictions laws and preferences for 1) data submission, and 2) data sharing.  This week, CSTE started reaching out to jurisdictions in an effort to help them join the new environment by facilitating the forthcoming DUA adoption and manage ongoing agreements. This DUA will be signed between the jurisdiction and ASTHO, who is leading the task of procuring and overseeing the BioSense 2.0 environment in the Internet cloud, as well as ensuring it meets strict security, Health Insurance Portability and Accountability Act (HIPAA) compliance regulations and National Institute of Standards and Technology (NIST) requirement for moderate impact information.  They also oversee the governance body, which is comprised of state and local health stakeholders that represent all BioSense 2.0 users.

One common misconception has arisen about data, both submission and sharing:

1. Data Submission: Jurisdictions can use the BioSense 2.0 environment to “catch” data submitted from hospitals and store it in secure space that is owned and controlled solely by the jurisdiction.  The system has the capability to transform it from line level de-identified data submitted from hospitals (for example, ISDS and CDC Meaningful Use Recommended HL7 data elements) to any format that a jurisdiction wants to use.  All of this is encompassed under data submission and is a set of actions that is restricted within the confines of a jurisdictions space.  Using this service also allows hospitals to take advantage of MUse incentives started to going out in November 2011, in correlation with the roll out of BioSense 2.0.  While this does not provide direct money to the health departments, it allows them to create an opportunity for hospitals to share syndromic surveillance data as one of the three public health options in MUse. Though a priority for the November 2011 roll out, the data submission will not be limited to MUse as users have expressed interest in various types of health-related data (even beyond healthcare).  The roll out for November 2011 will only address line listing submission of data from providers or health departments, in the future we hope to accommodate submissions of aggregate level data from health departments upon time when the community and the governance body see this as a priority for the Redesign team to implement.

2. Data Sharing: Outside of these activities is the shared space, where jurisdictions can elect to share views of de-identified data with other jurisdictions at the level they so choose (facility, city, county, or state).  The system is built to aggregate line listing data and make them available for jurisdictions to share in the shared space area at the level of aggregation where a jurisdiction is comfortable sharing it information. Further, CDC can only view data in the environment when invited as a collaborator, and cannot remove data from the environment or publish on any data without the express consent and notification of the jurisdiction and as outlined explicitly in the terms and conditions in the DUA. At a minimum, aggregated level-data for the level a jurisdiction allows to can be shared with CDC. As opposed to BioSense 1.0, CDC will not suck out any data from BioSense 2.0, nor will it have the control of any data; that control is delegated only to the jurisdiction and data can only be viewed by CDC at the level a jurisdiction authorizes it to see.

The Redesign team, working with the associations, has put together a Frequently Asked Questions (FAQ) document designed to address your most common questions and concerns about BioSense 2.0, I hope you take advantage of this rich resource.  Additionally, CSTE held a webinar on August 17, 2011 to introduce its members to BioSense 2.0. The webinar included an overview of the BioSense Program, an explanation of CSTE’s involvement, roles and responsibilities of the various associations and ISDS, and a preview of the latest BioSense application. I encourage you to view the recording of this webinar as it may help you further understand the significant changes underway with the redesign effort, what BioSense 2.0 entails, and how we arrived here with the help of state and local public health communities.

I want to continue the dialogue about BioSense 2.0, its services, governance, policies, and issues.  It is so crucial for all partners in this effort to remain engaged in order to ensure that the users, whom this redesign is centered around, are continually heard and responded to.  BioSense 2.0 is, at its core, intended to be a public health situation awareness program that state and local jurisdictions can actually use and find useful.  Our goal in the BioSense Program is to co-create a system that is simple to access and easy to maintain for the state and local public health communities.  Please continue to provide feedback, challenges, and ideas for BioSense 2.0.  I am looking forward to November 15, 2011, when BioSense 2.0 opens for business, and even more so, to seeing state and local health jurisdictions finally have a space to share, collaborate, and learn from each other.

PS: Please check back for information from ASTHO on their role in BioSEnse 2.0 soon!

Cheers, -Taha


This post was taken from the BioSense Community Forum and can be found in the original text here: https://sites.google.com/site/biosenseredesign/community-forum/checkinginwiththecommunityonbiosense20.

Thank you!

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