Table 1.
List of key themes and sub-themes
Key themes | Sub-themes | ||
---|---|---|---|
1 | Informed consent and the default ‘opt-in’ | 1 | Opt-out versus opt-in |
2 | Informed consent | ||
3 | Patient access to GP records | ||
4 | Apathy regarding default ‘opt-in’ | ||
2 | Trust | 5 | Lack of trust |
3 | Privacy and data security | 6 | Identifiable data |
7 | Privacy | ||
8 | Security issues | ||
9 | Confidentiality of patient data | ||
10 | care.data has risks | ||
4 | Involvement of private companies | 11 | Data accessed by insurance companies |
12 | Data for sale | ||
13 | Concerns about the involvement of a private IT company | ||
14 | Data going to other private companies | ||
15 | Care.data linked to NHS privatisation | ||
5 | Legal issues and GPs’ concerns | 16 | Data protection |
17 | Legal issues | ||
18 | GPs' concerns | ||
19 | Concerns about adding genomic data later | ||
20 | Police access to care.data | ||
6 | Communication failure and confusion about care.data | 21 | Communication failure |
22 | Confusion about what care.data is | ||
23 | care.data as a media event | ||
24 | care.data leaflet and junk mail | ||
25 | Conflicts of interest | ||
26 | Public ignorance about care.data | ||
27 | Mainstream media reports on care.data | ||
28 | PR and presentation of facts | ||
29 | Critics accused of scaremongering | ||
7 | Delayed implementation | 30 | Delay to implementation |
31 | Role of activists or activism | ||
32 | Flawed project | ||
33 | Change management | ||
34 | Another NHS fiasco | ||
35 | Pause will not affect implementation | ||
36 | A failed brand | ||
37 | Costs of care.data project | ||
38 | Technological problems | ||
39 | Accuracy of medical records | ||
8 | Patient-centeredness | 40 | Arrogance |
41 | Lack of patient and public involvement | ||
42 | Lack of patient-centeredness | ||
43 | Patient ownership of medical data | ||
44 | Lack of engagement | ||
9 | Potential of care.data and the ideal model of implementation | 45 | Pro care.data viewpoint |
46 | Ideal model of implementation | ||
47 | Benefits of open data | ||
48 | Accusing critics of scaremongering | ||
49 | Use of patient data is not new | ||
50 | Moral imperative for care.data |