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Table 3 Imagine you are asked to participate in a project that involves sharing your/the person you care for health information. In this context, how sensitive do you think each of the following types of information are?

From: Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations

(n = 2013) Number of people % of responses
Information on your disability
 Sensitivea 1022 51%
 Not sensitiveb 944 47%
 Don’t know 47 2%
Genetic information on your disease
 Sensitivea 986 49%
 Not sensitiveb 961 48%
 Don’t know 66 3%
Physiological data (e.g. blood pressure, results of biological analysis)
 Sensitivea 960 48%
 Not sensitiveb 1005 50%
 Don’t know 48 2%
Symptoms of your disease
 Sensitivea 838 42%
 Not sensitiveb 1141 57%
 Don’t know 34 2%
Name of your disease
 Sensitivea 664 33%
 Not sensitiveb 1315 65%
 Don’t know 34 2%
  1. Because of rounding, percentage might not add up to exactly 100%
  2. aIncludes those who responded either ‘very sensitive’ or ‘fairly sensitive’
  3. bIncludes those who responded either ‘very not sensitive’ or ‘not sensitive’
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Orphanet Journal of Rare Diseases

ISSN: 1750-1172