Organizacje pacjentów a ochrona zdrowia w Polsce
Patient organizations and health care in Poland

Author(s): Agnieszka Stasiewicz-Swinney
Subject(s): Business Economy / Management
Published by: Wydawnictwa Uniwersytetu Warszawskiego
Keywords: patients organisations; healthcare; chronic diseases; patient involvement; health activism
Summary/Abstract: Patients and patient organizations are becoming increasingly involved in health policy and operations of health care. The value of such activity plays a particularly important role in the area of chronic diseases such as cancer or rare diseases, where patients suffer from limited access to effective therapies due to lengthy clinical trials, complex regulatory procedures of drug registration and reimbursement. It has been suggested that input of patient organizations has a significant impact on reducing uncertainty and decision risk, throughout the entire process, beginning from the clinical trials, through engagement as experts in their diseases in registration and reimbursement, up to routine clinical practice applications. This comprehensive review examines the areas of patient organizations involvement at crucial stages of public healthcare operations. At present, activities of patient organizations seem to be closely related to the lifecycle of a medical product on the health care market and coverings following areas: psychological and emotional support, financial and non-financial assistance to patients, knowledge gathering and sharing, raising public awareness of their disease, participation in the design and conduct of clinical trials, early access programs, engaging in reimbursement decision making and advocacy aimed at regulatory changes. All inputs of patient organizations listed above generate significant impact on the health care system and shaping of drug policies. The findings demonstrate that involvement of patients, their families and patient organizations exist at many levels of the health care system. Due to study limitations, the extent and effectiveness of patient’s organization various initiatives have yet to be explicitly explored. Moreover, the existing input requires further studies to evaluate the level of engagement.

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