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Use of existing national datasets of deidentified data |
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Do you think that out-licensing from your institution (or from an institution in your country if you are not based in a healthcare institution) of a large body of detailed pseudoanonymised longitudinal secondary care (hospital) data to an organisation conducting research into postmarketing drug safety would: | Yes | No | Do not know |
(a) Require prior patient level consent? | 22 (59) | 14 (38) | 0 |
(b) Be likely to receive institutional approval? | 22 (59) | 6 (16) | 8 (22) |
(c) Raise significant ethical/information security concerns? | 21 (57) | 14 (38) | 1 (3) |
(d) Require data protection authority or another regulatory external body approval? | 26 (70) | 5 (14) | 4 (11) |
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Other aspects |
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Indicate your agreement/disagreement with the following as strong motivating factors for your institution’s participation in the EHR4CR platform (now or in the future). If you are not based in a healthcare institution, consider these factors for an institution in your country. | Strongly Agree | Agree | Neither | Disagree | Strongly Disagree |
Increased income generation from participation in more industry trials | 6 (16) | 20 (54) | 1 (3) | 5 (14) | 4 (11) |
Pressure from government or institution to participate in more pharma industry studies | 6 (16) | 8 (22) | 8 (22) | 11 (30) | 3 (8) |
Providing patients with faster access to new generation medicines | 10 (27) | 17 (46) | 4 (11) | 3 (8) | 2 (5) |
Development of local health information systems | 8 (22) | 19 (51) | 6 (16) | 1 (3) | 2 (5) |
Improvement of local data quality and healthcare | 14 (38) | 15 (41) | 3 (8) | 3 (8) | 1 (3) |
The potential to use EHR4CR platform to conduct academic studies | 13 (35) | 18 (49) | 3 (8) | 1 (3) | 0 |
Opportunity to improve the quality of data in clinical trials | 12 (32) | 17 (46) | 3 (8) | 3 (8) | 1 (3) |
Opportunity to improve the efficiency of clinical trials | 11 (30) | 20 (54) | 5 (14) | 0 | 0 |
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Indicate your agreement/disagreement with the following as significant threats in your institution or country to the success of EHR4CR. |
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Inadequate availability of key data fields in the patient record | 6 (16) | 16 (43) | 6 (16) | 6 (16) | 3 (8) |
Missing data in the patient record | 6 (16) | 17 (46) | 7 (19) | 7 (19) | 0 |
Inadequacy of local health information systems | 6 (16) | 16 (43) | 2 (5) | 10 (27) | 2 (5) |
Cost of upgrading local systems to be compatible with EHR4CR | 12 (32) | 10 (27) | 9 (24) | 6 (16) | 0 |
Ethical committee concerns | 3 (8) | 18 (49) | 4 (11) | 11 (30) | 1 (3) |
Local information governance concerns | 5 (14) | 19 (51) | 4 (11) | 9 (24) | 0 |
Data protection authorities | 4 (11) | 17 (46) | 5 (14) | 7 (19) | 2 (5) |
Concerns of hospital management | 2 (5) | 13 (35) | 8 (22) | 13 (35) | 1 (3) |
Concerns of patients | 3 (8) | 11 (30) | 5 (14) | 16 (43) | 2 (5) |
Concerns of clinicians | 0 | 13 (35) | 5 (14) | 16 (43) | 3 (8) |
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