Characteristics of respondent patient and citizen groups (280).
| No. (%) | |
| Field of interest | |
| Oncology and palliative care | 90 (32.1) |
| Diabetes | 39 (13.9) |
| Relationship difficulties and/or mental disabilities | 24 (8.6) |
| Neurological disease | 17 (6.1) |
| Genetic disorders | 17 (6.1) |
| Cardiovascular diseases | 14 (5.0) |
| Citizen groups | 13 (4.6) |
| Infectious diseases | 13 (4.6) |
| Rare diseases | 11 (3.9) |
| Haematological diseases | 7 (2.5) |
| Autoimmune diseases | 6 (2.1) |
| Respiratory diseases | 5 (1.8) |
| Other | 24 (8.6) |
| Number of members in 2016 | |
| <100 | 105 (37.5) |
| 100–500 | 81 (28.9) |
| 501–1000 | 18 (6.4) |
| >1000 | 34 (12.1) |
| No information | 42 (15.0) |
| Executive board composition | |
| Patients or citizens are the majority | 131 (46.8) |
| Patients or citizens are half of the members | 37 (13.2) |
| Patients or citizens are the minority (or not represented) | 31 (11.1) |
| Other | 39 (13.9) |
| No information | 42 (15.0) |
| Main sources of funding* | |
| Annual subscriptions, membership fees, donations, bequests | 209 (74.6) |
| Public funding (central, regional, local) | 72 (25.7) |
| Funding from pharma or medical device companies | 54 (19.2) |
| Funding from other commercial entities | 24 (8.5) |
| Bank foundations | 8 (2.8) |
| Other | 35 (12.5) |
| No information | 41 (14.6) |
| Type of activities | |
| Education and dissemination/information | |
| Yes | 206 (73.6) |
| No | 7 (2.5) |
| To some extent | 26 (9.3) |
| No information | 41 (14.6) |
| Financial support for research | |
| Yes | 51 (18.1) |
| No | 123 (43.9) |
| To some extent | 58 (20.7) |
| No information | 48 (17.1) |
| Lobby at the institutional level (local and central) | |
| Yes | 52 (18.6) |
| No | 130 (46.4) |
| To some extent | 49 (17.5) |
| No information | 49 (17.5) |
| Fund-raising | |
| Yes | 86 (30.7) |
| No | 44 (15.7) |
| To some extent | 105 (37.5) |
| No information | 45 (16.1) |
| Health/social support (eg, home care, access to services and so on) | |
| Yes | 132 (47.1) |
| No | 53 (18.9) |
| To some extent | 49 (17.5) |
| No information | 46 (16.4) |
| Surveys about health services | |
| Yes | 42 (15.0) |
| No | 89 (31.8) |
| To some extent | 100 (35.7) |
| No information | 49 (17.5) |
| Area of activity | |
| Local | 110 (39.3) |
| Regional | 65 (23.2) |
| National | 64 (22.9) |
| No information | 41 (14.6) |
| Member of international network | |
| Yes | 99 (35.4) |
| No | 140 (50) |
| No information | 41 (14.6) |
*More than one answer possible, so the sum of responses is over 100%.