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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’