The report "Patient Organisations in Poland. Structure. Activities. Needs"

Presented at the 12th Patients' Organisations Forum in Warsaw, the publication presents a picture of organisations working for patients in Poland. The report is based on data obtained from 3 independent sources, i.e. quantitative research conducted in the environment of organisations operating in the health care sector and additionally declaring activities for the benefit of patients, data from the nationwide survey "Condition of the NGO sector in Poland 2015, conducted by the Klon/Jawor Association, concerning NGOs, and a qualitative survey conducted among activists of large organisations acting for the benefit of patients, active in various therapeutic areas (corresponding to different fields of medicine).

Key findings  There are approximately 5,300 organisations active in the field of health care in Poland, of which approximately 1,000 are patient-focused entities. Among the latter, almost 3/4 (73%) are associations or their field units. The average 'age' of an organisation in the health area is 13 years, while that of a patient-focused organisation is 15 years. The most common reason for setting up organisations is the personal experience of their founders, i.e. the need to act together and exchange experienceś with other people struggling̨ with their own or their relatives' illness, the desiré to share with others the knowledge they have gained while struggling with their own or their relatives' illness. Such reasons are indicated by 59% respondents. The most common form of activity is the dissemination of knowledge about specific diseases, both in terms of their prevention̨ and treatments (89% organisations). Providing psychological support to patients or their relatives is also common (83%). Slightly more than half of the actors (53%) carry out advocacy activities with the aim of bringing about systemic change in their area of interest́. Organisations arę primarily focused on helping patients undergoing treatment (85% organisations). Approximately two-thirds (68%) work for the immediate environment of patients, their families and relatives. In contrast, just over half target their activitieś to people who have had the disease and arę in the recovery stage, or to patients who are not in treatment. The vast majoritý of the membership base of associations as well as the boards of organisations are women. The board of an average organisation has 5 members, of which 3 are women and 2 are former or current patients. Organisations active in the field of health care relatively often employ̨ permanent, regular staff compared to the NGO sector as a whole - 40% of them do so (in the NGO sector as a whole - 35%). The average active organisation with permanent and regular staff in this area employs 5 people whose work corresponds to a temporary commitment equal to 2.5 full-time equivalents. Three quarters (76%) of patient organisations involve volunteers in their activities. The most important partners of patient organisations are other patient organisations, with 82% entities working with them. Clinics or hospitals are also important partners (71% organisations) and for 63% they arę non-governmental organisations outside the health sector. Close to 44% organisations have contacts with pharmaceutical or medical companies. The most common form of cooperation with other organisations is̨ meetings and information exchange - 72% patient organisations work in this way. The most common form of cooperation is non-financial support - 67% of them receive assistance from companies in the form of items or free services. Slightly fewer organisations (63%) report receiving financial support from these companies. Cooperation in terms of advocacy activities and contacts with public administration is declared by 49% entities. Less than half (43%) of patient advocacy organisations declare to have participated in the development or consultation of documents prepared by the central administration in the last two years. The problem affecting the largest part̨ of the organisations is̨ the overly complicated paperwork involved in using grantors, sponsors or EU funds, with 88% entities complaining about this. A similar proportioń of organisations (86%) complain about bureaucracy in dealing with public administration, and 74% perceive its low opennesś to the demands of the health sector. A significant group of problems for patient organisations arę people-related issues: 78% complain̨ about the lack of people willing to engage selflessly for the benefit of others, and 65% find it difficult to retain good staff or volunteers. As many as 96% representatives of patient advocacy organisations admit to feeling the need tǫ expand their knowledge or acquire additional skills through training or consultancy. The most frequently indicated area requiring educational support is fundraising: 68% organisations admit that they would like to learn̨ more about seeking funding sources or writing proposals. The report was prepared as part of a project run by the Institute for Patient Rights and Health Education, 'Network for Health', which is aimed at all organisations working for the benefit of patients in Poland. The aim of the initiative is to strengthen the voice of patient organisations in society, to integrate the community and to exchange information on important initiatives and events related to healthcare in Poland and the European Union. The patron of the project is the Janssen company.