A Broad, Holistic Approach to Data Privacy Remains a Valuable Method for Protecting Patient Privacy

To design and maintain health IT systems that respect patient choice, protect privacy, and still enable providers to deliver quality care, one derives significant value by adopting a holistic privacy framework grounded in the FIPPs. This is not a novel concept; indeed, almost every organization that has recommended a privacy framework in the past 40 years has leveraged FIPPs. This section briefly discusses some of the advantages of such an approach and highlights three examples of privacy frameworks from the White House, the Markle Foundation, and HHS.

Benefits of a Holistic Approach

A holistic approach to privacy that leverages FIPPs is valuable because it is enduring, it fosters trust, and it is flexible. First, a holistic approach is historically well regarded. Today, privacy and security experts around the world are familiar with concepts like openness and transparency, collection limitation, individual participation and control, data integrity and quality, security safeguards and controls, and accountability. These concepts have stood the test of time, even when confronted with rapid advances in technology. Most organizations interested in privacy have embraced FIPPs as the starting point for their own frameworks, and by 2012 these principles have become part of a global privacy lexicon.

Second, the enduring nature of a FIPPs-based approach fosters public trust in health IT. Simply stated, FIPPs enable system designers to balance patients’ rights and expectations with the provider’s ability to use PHI. In its biannual Public Policy Principles, HIMSS expresses its support for the use of “Fair Information Practices as a basis for establishing sound information laws, policies, and practices to support and promote good data stewardship and foster public trust in the collection, access, use, and disclosure of individually identifiable health information.”⁴⁸

Third, a holistic approach is also valuable because it is flexible. Each fair information practice principle can be adapted as technologies and the user environment evolve. For example, FIPPs can be applied to any HIE, regardless of whether the HIE operates a federated model (in which PHI is stored locally on multiple end-user systems and queries are routed by an RLS), or a centralized model (in which PHI is stored in a central location and then delivered to authorized end-user systems).