Table 3 Participant opinions on research, consent and use of health information
From: A survey of patient perspectives on the research use of health information and biospecimens
Statement | Strongly Disagree % | Disagree % | Neutral % | Agree % | Strongly Agree % |
|---|---|---|---|---|---|
1. Promoting good medical research is an important goal for the community | 1.4 | 0.5 | 0 | 31.3 | 65.9 |
2. Sometimes medical research cannot be undertaken without using individuals identifiable health information | 3.8 | 5.2 | 13.7 | 55.5 | 19.0 |
3. I trust Research Ethics Boards to make decisions about when individuals’ consent for use of their identifiable health information for research is necessary | 0 | 2.4 | 16.6 | 50.7 | 28.9 |
4. Sometimes, getting an individual’s consent to use identifiable health information for research might be so difficult that it would prevent the research from being done | 1.9 | 8.1 | 18.5 | 51.7 | 16.1 |
5. If consent can only be obtained from some individuals and therefore only some information can be gathered, the research results might not be as useful | 0.9 | 10.4 | 12.3 | 53.1 | 20.4 |
6. Individuals should always be asked if their de-identified health information can be used for medical research | 7.1 | 11.4 | 11.4 | 44.5 | 22.7 |
7. Individuals should always be asked if their identifiable health information can be used for medical research | 2.8 | 2.4 | 12.3 | 45.0 | 34.6 |
8. Consent must be obtained in writing or by electronic means (i.e., by email) for it to be OK | 3.8 | 13.3 | 17.1 | 41.7 | 21.3 |
9. It is OK to obtain consent verbally (i.e., over the phone, or in fact to face discussion) | 6.6 | 25.1 | 19.4 | 37.9 | 8.5 |
10. When individuals are unable to give their own consent, it is OK to get consent from a family member | 3.8 | 11.8 | 15.2 | 54.5 | 11.4 |
11. There are risks from researchers using identifiable health information | 4.7 | 16.6 | 30.3 | 39.3 | 6.6 |
12. There are benefits from researchers using identifiable health information | 0.9 | 4.7 | 9.0 | 53.1 | 29.4 |
13. I trust medical researchers to use identifiable health information respectfully | 0 | 0.9 | 13.7 | 52.6 | 29.9 |