Because irreversible anonymization often is undesirable on scientific grounds, the procedures and methods of key-coding of various forms are essential techniques. Some of the practices are very technical. Degree of key-coding or "masking" is relative. It is a question of the extent to which personal identifiability is obscured—which is to say, t
For many purposes researchers must keep the ability to trace back, even if through intermediaries, to the data-subjects. Irreversible anonymization is not necessarily desirable. There are a number of important reasons why retaining personal identifiability—either openly labelled or via key-coding—may be essential:
Much very useful health research is performed on completely anonymized data. If for a particular research project there are no compelling reasons for retaining at least potential identifiability, anonymized data should be used. Though this injunction might sound unnecessary, it is stated here because often, data with identifiers are used just beca
From a privacy-protection perspective, there is a very wide distinction between personally identifiable data and truly anonymized data . But in practice the demarcation between these extremes is not sharp. Attending assiduously to where particular data lie on the spectrum between them, and especially to data that are somewhere in the middle, i
One of the most reassuring things a research organization can say with respect to the privacy of the people whose health data it is studying, is: "We don't know the personal identity of our data- subjects; and we really don't want to know." 60 This should not necessarily mean that no-one can trace back to the data-subject if scientific reason
Research on healthcare markets has to be noted here because often such market research now is being performed by, or for, units of organizations that have access to personal data collected for clinical research or disease management.
As every newspaper reader is aware, every aspect of health care now is being subjected to economic analysis—to size up the costs of illness and costs in specific episodes of care, evaluate cost-effectiveness of different interventions, see what effects various cost-related incentives have, and understand the component costs in healthcare systems
A prime example of innovation is the elaborate work of developing and improving the use of pharmaceuticals, medical devices, diagnostic instruments and tests, vaccines, and other "tools" of health care. 53 After much preliminary screening, an experimental entity or procedure is subjected to a long series of clinical trials , perhaps on tens of
Much research is performed to evaluate public-health programs, clinical practices, and the effects of innovations. 50
Many approaches are taken for studying how people avail themselves of health care, why they do or don't take various actions, and what factors relate to the behavior. In efforts to enhance women's health, for instance, records are accumulated on Pap smears, breast exams, mammographic screening, obstetric examinations during pregnancy, and countles
Whether or not they are to be considered "research," a classic category of investigations have to do with coping with disease outbreaks and epidemics, and with other emerging or emergency threats.
All over the world, health and disease are monitored. Starting with prenatal observations and birth data, throughout life health-related measurements and observations accumulate. Analyses are made to portray the "natural history" of diseases and disabilities—how they start, progress in a person or spread to others, and run their courses. Also an
Basic research develops the fundamental science that underpins all applied research. It uses every experimental approach possible, every kind of instrumental observation, every epidemiological and other analytic technique. It uses social-scientific methods where these can illuminate basics. It studies simplified "model" systems, in search of insig
Contemporary health research is generating a multitude of benefits for humankind, and the future benefits look at least as promising. The following sketches can hardly do justice to the myriad complex activities. But they indicate some of the research purposes and approaches, the character of the data, and the privacy-protection problems involved.
Health data are zipped around the world all day every day, by government research agencies, pharmaceutical firms, academic researchers, and many others. Data on Americans are transferred, American institutions do much data-transferring, and data are transferred for important American purposes.
Among the most important resources for research are databases and registries of health experience. Some are highly specialized but not very large; some are broad and enormous. Some are maintained only for research; some are primarily maintained for administrative or other purposes but are available for research. They may be organized by illness (l
Just as varied as the types of health data, of course, are the types of individuals and organizations who hold or process the data. Data are processed by:
So many kinds of health data are collected that it would be distracting and soporific to do more here than take note of the major categories. But it is essential to recognize: (a) that great research power resides in a diversity of health data, and (b) that privacy issues surround many kinds of data beyond those in primary medical records. Healt
Although definitions need not be belabored here, a few concepts and items of vocabulary are necessary. Data is taken to mean discrete bits of information. As one dictionary has it: "Data are facts or figures from which conclusions may be inferred." For most research now, data are converted into numerical form for processing by computers. D
Several current changes in the context within which health data are collected and used must be recognized. First, the boundaries between classical medical care and "public health" are becoming ever less distinct. Over the past decades the rubric, "health," has been broadened to include many matters—from hyperactivity in children, to teenagers' n