{"id":905,"date":"2018-02-09T15:08:54","date_gmt":"2018-02-09T14:08:54","guid":{"rendered":"http:\/\/ippez.pl\/?p=905"},"modified":"2019-02-26T18:12:02","modified_gmt":"2019-02-26T17:12:02","slug":"report-patient-organisations-in-poland-structure-of-activity-needs","status":"publish","type":"post","link":"https:\/\/ippez.pl\/en\/raport-organizacje-pacjentow-w-polsce-struktura-aktywnosci-potrzeby\/","title":{"rendered":"The report \"Patient Organisations in Poland. Structure. Activities. Needs\""},"content":{"rendered":"<div class=\"pr-story-lead\">\n<p class=\"pr-header--xsmall pr-font--sans\"><strong>Patient advocacy organisations in Poland are most often established because of personal experience with the disease. Most often, women are active within these organisations, and the most common form of activity is the dissemination of knowledge about the disease and support for patients or their families. The Institute for Patient Rights and Health Education, together with the Klon\/Jawor Association, has produced a report entitled 'Patient Organisations in Poland. Structure. Activities. Needs\" presenting the condition of NGOs working in the field of health.<\/strong><\/p>\n<\/div>\n<div class=\"pr-story-paragraph\">\n<div class=\"pr-text--xxlarge pr-text--xxlarge--serif\">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).<\/div>\n<\/div>\n<div class=\"pr-story--quote\">\n<div class=\"pr-story--quote--icon\">\u00a0<\/div>\n<div>\n<p class=\"pr-text--xxlarge pr-font--sans pr-font--condensed\">The report \"Patient Organisations in Poland. Structure, activities, needs\" is an important publication on organisations whose daily work is of considerable importance for millions of patients and their relatives. It is no coincidence that its publication coincides with the World Day of the Sick. This is because it provides a special opportunity to express respect and recognition to all those who, through their professional or social activities, express\u0328 care for the sick. Helping patients and their relatives is precisely the main theme of this publication. This is because, as can be seen from the data collected, patient organisations in Poland were overwhelmingly formed as a result of their own experiences\u0301 of illness. This is why there is so much determination in their activities to disinterestedly help people in a similar situation. We hope that the data collected and the conclusions presented in the report will contribute to a better understanding of the mission of non-governmental organisations working for the benefit of patients and recognition of their important role in improving the quality of life and health of Poles.<\/p>\n<p class=\"pr-text--large pr-font--sans pr-font--spacing pr-font--uppercase padding-top--medium text--wrap pr-font--condensed\">KS. DR ARKADIUSZ NOWAK, PRESIDENT OF THE INSTITUTE FOR PATIENT RIGHTS AND HEALTH EDUCATION<\/p>\n<\/div>\n<\/div>\n<div class=\"pr-story-paragraph\">\n<div class=\"pr-text--xxlarge pr-text--xxlarge--serif\"><strong>Key findings\u00a0<\/strong> 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 experiences\u0301 with other people struggling\u0328 with their own or their relatives' illness, the desire\u0301 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 prevention\u0328 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 interest\u0301. Organisations are\u0328 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 activities\u0301 to people who have had the disease and are\u0328 in the recovery stage, or to patients who are not in treatment. The vast majority\u0301 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 employ\u0328 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 are\u0328 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 is\u0328 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 part\u0328 of the organisations is\u0328 the overly complicated paperwork involved in using grantors, sponsors or EU funds, with 88% entities complaining about this. A similar proportion\u0301 of organisations (86%) complain about bureaucracy in dealing with public administration, and 74% perceive its low openness\u0301 to the demands of the health sector. A significant group of problems for patient organisations are\u0328 people-related issues: 78% complain\u0328 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 to\u0328 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 learn\u0328 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.<\/div>\n<\/div>\n<div class=\"pr-text--xxlarge pr-text--xxlarge--serif\">\u00a0<\/div>\n<div class=\"pr-text--xxlarge pr-text--xxlarge--serif\">The report can be downloaded from the link\u00a0<a href=\"https:\/\/ippez.pl\/wp-content\/uploads\/2018\/02\/RAPORT_Organizacje-pacjento\u0301w-w-Polsce.-Struktura.-Aktywnos\u0301ci.-Potrzeby_IPPEZ.pdf\">REPORT_Patient organisations in Poland. Structure. Activities. Needs_IPPEZ<\/a><\/div>","protected":false},"excerpt":{"rendered":"<p>Organizacje dzia\u0142aj\u0105ce dla dobra pacjent\u00f3w w Polsce powstaj\u0105 najcz\u0119\u015bciej z powodu osobistych do\u015bwiadcze\u0144 z chorob\u0105. Najcz\u0119\u015bciej w ramach tych organizacji dzia\u0142aj\u0105 kobiety, a najpowszechniejsz\u0105 form\u0105 dzia\u0142alno\u015bci jest popularyzowanie wiedzy na [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","inline_featured_image":false,"footnotes":""},"categories":[1,426],"tags":[],"class_list":["post-905","post","type-post","status-publish","format-standard","hentry","category-aktualnosci","category-instytut"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Instytut Praw Pacjenta i Edukacji Zdrowotnej<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/ippez.pl\/en\/report-patient-organisations-in-poland-structure-of-activity-needs\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Raport &quot;Organizacje pacjent\u00f3w w Polsce. 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