Over the last 10 years, I have exposed many fallacies in well-intentioned privacy protection schemes. On the other hand, I have developed technical solutions with provable guarantees of privacy protection. My results have been within and beyond healthcare and reported widely. (See Data Privacy Lab and my CV for examples.)

My experiences reveal that the best way to address most stakeholder concerns (e.g., privacy, usability, liability, accountability, affordability) is through technology design. Unfortunately, technology is usually deployed, and then afterwards, privacy and other stakeholder barriers emerge, leaving society in a take it, leave it, or try to mend it position. Sometimes, privacy measures are developed in a silo, separate from the useable technology. This often results in add on solutions that tend to be policy heavy using crude decisions. We can do better than this. When technology developers consider privacy and stakeholder concerns throughout the design process, resulting technology promises to be worry free, and therefore likely to enjoy user acceptance, societal adoption, and organizational uptake. (See my paradigm for constructing provably appropriate technology. Many others have come to similar decisions about privacy by design. See work by Ontario's Privacy Commissioner, Dr. Ann Cavoukian and Professor Helen Nissenbaum)

When one considers possible national health information infrastructures, there is no shortage of potentially grave privacy concerns. Yet, most privacy concerns can be sufficiently addressed through technology design. But design should precede adoption of existing standards, practices, and overarching principles. Otherwise, we risk igniting new stakeholder problems and exasperating old ones by applying existing approaches in a different context and on a different scale.

A key problem with moving forward is the lack of available well-formed possible designs in which to consider actual privacy concerns. In the absence of well-formed designs, it is extremely difficult to identify real privacy and other stakeholder concerns from perceived ones, and is virtually impossible to offer meaningful remedies.

The Office of the National Coordinator (ONC) in the U.S. Department of Health and Human Services is charged with promoting the development of the national health information infrastructure. We want ONC to be able to contemplate competing designs for various interoperable parts of the infrastructure, to compare and contrast critical stakeholder issues in each proposed design, and then to construct a final design based on rigorous analyses and consideration. But ONC cannot do this alone.

Many of us in academia are willing to help. Our idea is to join with industry and other stakeholders for intense, in-depth analyses sufficient to generate well informed designs. For this reason, we launched the AdvanceHIT Project. Initial research foci are at Carnegie Mellon, Harvard, and MIT, though we welcome industry participation, stakeholder involvement, other academic contributors, and public comments throughout the process. Success: helping industry provide 5 viable competing designs for ONC's consideration. To get us there quickly, we are hosting an open design competition in which anyone can participate and we welcome all contributions.

The design competition for the national health information infrastructure consists of three sequential phases. The first phase involves writing designs and commenting on designs. The second phase assesses designs based on common comparison criteria. The final phase reports overall results. (more)

One way to vote for designs is through financial donations. In terms of financial support, unless explicitly stated, the AdvanceHIT Project receives no funds to produce any specific paper or analysis, though once written, donations to the AdvanceHIT Project are accepted to show support for the work and to support the work's dissemination and non-specific Project activities.

Industry and other stakeholders show support for a design by making financial contributions (tax deductible) after the paper is done. Entities donating $50K or more appear on the paper's web page as Premier Supporters. Donors giving less than $50K, but $5000 or more, appear as Supporters on the paper's web page. Donations less than $5000 have no names listed, but the total dollar amount received is included in the total support figure reported for the paper on its web page. (more)

AdvanceHIT began as a project of the Data Privacy Lab at Carnegie Mellon University, but is now hosted by Harvard University. Work is primarily conducted across Carnegie Mellon University, MIT, and Harvard University campuses though participation of the best and brightest from all areas is solicited.

Thank you.

Latanya Sweeney, Ph.D.
Director, AdvanceHIT Project
Director, Data Privacy Lab
Visiting Professor, MIT, Computer Science, 32-383
Visiting Professor, Harvard, Computer Science, MD329

Distinguished Career Professor of Computer Science, Technology and Policy
School of Computer Science, Carnegie Mellon University

AdvanceHIT Project
School of Engineering and Applied Science
Harvard University
33 Oxford St, Maxwell Dworkin 329
Cambridge, MA 02138 USA
Email: latanya@seas.harvard.edu
advancehit.org

Dr. Sweeney is a member of the Federal HIT Policy Committee, and the AdvanceHIT Project and documents on this website do not necessarily reflect opinions of ONC, HHS or the Obama Administration. These views are for the benefit of public education and informed discourse, and are not necessarily opinions regarding any position Dr. Sweeney herself may take on related issues decided by the HIT Policy Committee.