Supporting the Public Health Infrastructure
When I was president in 1984, President Reagan had started the process of eviscerating federal data systems. I think it is appropriate that, in talking about infrastructure, I focus on data again 13 years later, because I think we have just as serious problems with data now, although I think they are somewhat different.
Data represent one of the most important parts of the infrastructure of public health and of all our activities. Information is power and we need good information in order to exercise power for the public weal. We have always used data for what we now call assessment, policy development, and assurance. We have always in the past faced issues of validity, comparability, and, particularly, timeliness, but not so much issues of confidentiality; data that went through local health departments was known to be confidential.
Now we face serious issues relating to confidentiality and privacy as technology changes the kinds of both personal and population-based databases that we use in our work and to which others have access. For example, there are potential uses to which genetic testing could be taken if we are not very careful to make sure that confidentiality and privacy are preserved. I am also concerned about what I see partly in the census, but also in other places, as a blurring of race and class. I don’t think that we have ever adequately separated those and the effects that they cause and their role in the etiology of disease. I think now, with some of the changes that are being made or proposed to be made in the census, that we are going to have more trouble separating race and class than ever before.
We all need to continue to monitor what is happening with data systems and to speak out to improve these systems, protect our confidentiality, and fight for data systems that will maintain their usefulness to us as we go about our work of protecting the public’s health.