The phrase “knowledge is power” is particularly true when it comes to our local nonprofits and foundations and the unique goals they seek to achieve. For organizations with a focus on social impact to serve an individual at the highest level, they need as much information about that person as possible – critical data like
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Spencer Bonnie[/caption]
"Collective impact is really predicated on how organizations from multiple sectors share data with each other," said Bonnie. "That data is then used to paint a picture of what's going on with the population that all those entities are seeking to serve."
WillBridge is following in the steps of Achieve Brown County, which has a platform called the Brown County Community Information System. Through this system, various nonprofits, foundations, and social impact organizations can share individual-level data securely. What makes this system unique is the fact that these entities have not only found a solution for securely sharing data, but also for building trust between themselves, said Bonnie.
While at Achieve Brown County, he quickly realized the importance of what the nonprofit was doing. He began talking with Chang and the pair considered the possibility of creating a platform that would allow organizations across the country to securely share data in the same way. The first question the duo faced was: what organization would take this data in good faith, while meeting compliance and governance rules, and not share the data at any point in time?
"I couldn't find an organization that could be efficient and effective in offering all that technology has to offer while not having selfish uses of the data for their own benefit," said Chang.
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Tina Chang[/caption]
This left one option: they would need to build out the platform themselves. Leaning on the roadmap laid out by Achieve Brown County, Chang’s team at SysLogic helped build out WillBridge’s DataCommunity platform.
Through the DataCommunity platform, nonprofits, health care systems, government agencies and social impact companies can improve how they identify and understand the needs of the populations they serve. Research institutions, health information exchanges and other data sharing organizations can collaborate and learn from one another while deepening the value of the data they hold.
DataCommunity is secure and allows organizations to remain fully compliant with federal laws like HIPAA and COPPA.
"We take our responsibility for ensuring the safe and ethical use of data very seriously,” said Bonnie. “What that especially means is we will not do anything with the data that is shared with us except what the data contributors tell us we should do with it.”
State-level change
Chang and Bonnie aren’t stopping with the creation of the DataCommunity platform. Together, the pair helped introduce a regulatory framework for data sharing between organizations a bill was introduced in the state Assembly in December and a public hearing on the legislation was held in February.
“We really care that there are rules of engagement and a playbook to follow that shows how you share data with good governance, good cybersecurity and good data,” said Chang.
Under the bill, a data owner would be required to limit the access to, sharing of, and use of its data to what is adequate, relevant, and reasonably necessary for the purposes for which the data is collected or generated. A data owner would also be required to establish and ensure compliance with relevant regulatory requirements and with internal policies related to the review of data sharing and data use requests.
"A lot of people ask, 'So, what's in it for you, Tina and Spencer?' Actually, nothing. We're already following great rules because we know how to and we care. But we recognize that there's no playbook out there of how to do good, responsible data sharing,” said Chang.
In the absence of any set framework, Bonnie said it took Achieve Brown County and its partners several years to build out their data sharing platform. If the bill is passed it will provide that framework.
Community partners
WillBridge is piloting its platform with a StriveTogether network member in Muscatine, Iowa. The organization, called Align Impact Muscatine County, already works with dozens of community partners, and is engaged with local school districts and government agencies to receive individual-level data. This made the organization the perfect partner, according to Chang.
Locally, WillBridge is working with the nonprofit