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Table 6 Imagine you are still in a situation in which you are asked to participate in a project that involves sharing your/the person you care for health information. People involved in the project can belong to different types of organisations. How much confidence do you have in each of them to handle and use your health information carefully?

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

Medical doctor involved in your healthcare Confidencea 1795 89%
Little confidenceb 198 10%
Don’t know 20 1%
Researcher from a non-profit organisation (e.g. university or public hospital) Confidencea 1592 79%
Little confidenceb 360 18%
Don’t know 61 3%
Patient organisation Confidencea 1546 77%
Little confidenceb 391 19%
Don’t know 76 4%
Healthcare professionals other than medical doctors (e.g. dentists, pharmacists, nurses, physiotherapists) Confidencea 1381 69%
Little confidenceb 571 28%
Don’t know 61 3%
Government or institution from a country within the European Union Confidencea 1017 51%
Little confidenceb 860 43%
Don’t know 136 7%
Government or institution from your country Confidencea 988 48%
Little confidenceb 946 47%
Don’t know 79 4%
Researcher from a private genetic testing company Confidencea 956 47%
Little confidenceb 936 46%
Don’t know 121 6%
Researcher from a pharmaceutical or medical device company Confidencea 911 45%
Little confidenceb 1010 50%
Don’t know 92 5%
Government or institution from a country outside Europe Confidencea 625 31%
Little confidenceb 1219 61%
Don’t know 169 8%
An insurance company Confidencea 315 16%
Little confidenceb 1619 80%
Don’t know 79 4%
  1. Because of rounding, percentage might not add up to exactly 100%
  2. aIncludes those who responded either ‘a great deal’ or ‘quite a lot’
  3. bIncludes those who responded either ‘not very much’ or ‘none at all’