by Dr. Teri Behrens, director of special projects and editor in chief of The Foundation Review at the Johnson Center for Philanthropy
Lucy Bernholz blog post today points out that while we’ve been paying attention to how government and business use personal data about their clients and customers, the use of data by nonprofits has not had much public scrutiny. She notes the irony in an upcoming White House conference:
I’m happy to see that the White House, in partnership with several civil society organizations, including major universities, think tanks and advocacy organizations is hosting some public conversations on data and data privacy. But what amazes me is that the agenda – even as the nonprofits host the discussion and have their leaders speak on the panels – neglects to consider the direct implications for civil society of our networked data age.
It is surely time to have this discussion. The recent collective impact craze gives the issue of data privacy in the sector real urgency. We’ve begun to see the rise of “big data” organizations in the sector. The consulting industry is booming (just search for “data analytics”). The analytical tools are becoming less expensive and more broadly available (Google’s Cloud Platform, for example).
As more communities seek to bring together partners around common goals and shared data, are issues of data privacy being adequately addressed? While educators and health professionals are bound by federal laws (Family Educational Rights and Privacy Act and Health Insurance Portability and Privacy Act) restricting sharing of data, other nonprofits have no such restrictions, although of course there are professional ethics that staff adhere to.
In my role as an evaluation professional who has advocated that foundations be more rigorous in their evaluations and more data-driven in their decision-making, I applaud these developments. The potential to focus efforts and increase impact is exciting and could revolutionize the sector. However, my personal values (I hate having information about me turned into someone’s marketing data) create a nagging sense that we need to tread cautiously. Those of us who are advocates of data-driven philanthropy need to ask ourselves some hard questions. Sure, we are all for personal information about nonprofits’ clients being used to assess outcomes and to improve nonprofit performance. Would we draw the lines differently if it were data about us or our children?
It is time for a sector-wide discussion on the promises and perils of big data. What kinds of privacy rights do we want to insist on when we interact with a nonprofit as a client or donor (“data-provider”)? What rights to data do foundations and other funders assert, under what conditions and restrictions?