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

Table 1 If given the opportunity, would you be willing to make your/the person you care for health information available for the purpose of

(n = 2013)	Number of people	% of responses
Better understanding mechanisms and causes of your disease
Yes^a	1954	97%
No^b	40	2%
Don’t know	19	1%
Developing new treatments for your disease
Yes^a	1953	97%
No^b	41	2%
Don’t know	19	1%
Improving diagnosis of your disease or suspected disease
Yes^a	1946	97%
No^b	44	2%
Don’t know	23	1%
Receiving additional specialist advice on your care
Yes^a	1915	95%
No^b	76	4%
Don’t know	22	1%
Improving research and care on diseases other than yours
Yes^a	1803	90%
No^b	166	8%
Don’t know	44	2%
Carrying out research not related to the medical field
Yes^a	1029	51%
No^b	841	42%
Don’t know	143	7%

^aIncludes those who responded either ‘yes, definitely’ or ‘yes, probably’
^bIncludes those who responded either ‘no, probably not’ or ‘no, definitely not’
Because of rounding, percentage might not add up to exactly 100%

ISSN: 1750-1172