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Table 8 From the list below, what are the three main pieces of information about the project that would be important for you to receive? (Please select three responses in priority order)

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
Detail on how the project could be beneficial for your disease or other diseases 1605 80%
Brief summary of the key information necessary to understand the main aspects of the project 1032 51%
Information about the data management rules (ie. how access to my health information will be granted or is there an ethical review?) 988 49%
Information about professionals involved in the project who can access the health information (e.g. their biography) 797 40%
Information on how professionals involved in the project might benefit professionally from accessing my health information 750 37%
Information on the measures taken to prevent security breaches 561 28%
Don’t know 64 3%
I wouldn’t give the possibility of sharing these health information 28 1%
Other 26 1%
  1. Several answers possible, so percentage does not total 100%