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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’