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Table 2 From the list below, what are the three main options that would encourage you to participate in a project involving the sharing of your/the person you care for health information? (Please select the 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
The possibility to learn more information about your disease 1382 69%
The possibility to discuss and ask questions directly to professionals involved in the project 1322 66%
The possibility to be informed on the results of the project 1251 62%
The possibility to access your health information 541 27%
The option to withdraw the information at any point during the project 505 25%
Being sure to be contacted if your information has been misused 478 24%
Having the time to process the information and decide at a later stage on whether you want to participate 343 17%
Other 46 2%
I wouldn’t give the possibility of sharing these health information 28 1%
Don’t know 25 1%
  1. Several answers possible, so percentage does not total 100%