The evolving role of patient advocates in rare cancers: opportunities and challenges

Gonzato, Ornella; Gronchi, Alessandro

doi:10.1080/14737167.2019.1526083

Cited by 4 publications

(9 citation statements)

References 13 publications

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“…W wietle teorii kolektywnego dzia ania potencjalna szansa na leczenie jest dobrem zbiorowym stanowi cym cel do osi gni cia dla ca ej OP jako zbiorowo ci (Kelly, 2012). Zanim jednak do tego dojdzie, po drodze czekaj inne korzy ci stymuluj ce do dzia ania: lek wchodz cy do bada przek ada si na now , dost pn wiedz na temat samej choroby, mo liwo udzia u w badaniach klinicznych, szans na wczesny dost p do leczenia, zanim b dzie ono komercyjnie dost pne na rynku (Boon, 2010;Gonzato, 2019).…”

Section: Wst Punclassified

“…Dzi ki temu zgodnie z protoko em zaakceptowanym przez EMA i FDA wi cej pacjentów z chorob rzadk mia o szans odnie korzy ci z leczenia substancj aktywn , bez szkody dla wyniku samego badania (Polich, 2012). Stanowi to dowód wykorzystania wiedzy i do wiadczenia pacjentów na etapie rozwoju i bada poprzedzaj cych dopuszczenie leku do komercyjnego stosowania (Terry, 2015;Gonzato, 2019). Wspó praca lekarz-badacz i OP mo e przynosi korzy ci dla funkcjonowania i bud etu ochrony zdrowia.…”

Section: Badania Kliniczne I Wp Yw Na Bud Et Ochrony Zdrowiaunclassified

“…Nie ma w tpliwo ci, e pacjentowi zapewnia korzy , bez której mia by ograniczone szanse prze ycia. Stanowi tak e warto dodan dla bud etu pa stwowej ochrony zdrowia, mierzaln w postaci bezpo rednich i po rednich kosztów leczenia (Komlos, 2012;Gonzato, 2019). Dok adne okre lenie skali i warto ci na rynku polskim wymaga jednak dalszych bada .…”

Section: Leczenie W Ramach Programów Wczesnego Dost Pu (Early Access ...unclassified

“…Stanowi to ekonomiczny cel podejmowania aktywnoci przez grup , gdy przynosi korzy ci wszystkim jej cz onkom. Tym samym uzasadnia celowo anga owania si organizacji pacjentów w aktywno ci zapewniaj ce im dost p do leku i terapii (Gonzato, 2019). Zaanga owanie organizacji pacjentów w proces refundacyjny inicjowany przez producenta leku i realizowany przez organy decyzyjne w ochronie zdrowie koncentruje si na dostarczaniu informacji do wykorzystania w ocenie technologii lekowej, wyrobu medycznego prowadz cego do wydania decyzji administracyjnej przez Ministra Zdrowia.…”

Section: Zaanga Owanie W Proces Refundacyjny Lekuunclassified

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Organizacje pacjentów a ochrona zdrowia w Polsce

Stasiewicz-Swinney¹

2022

Ochrona Zdrowia I Gospodarka. Przegląd Współczesnych Problemów Systemu Opieki Zdrowotnej

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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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Section: Wst Punclassified

Section: Badania Kliniczne I Wp Yw Na Bud Et Ochrony Zdrowiaunclassified

Section: Leczenie W Ramach Programów Wczesnego Dost Pu (Early Access ...unclassified

Section: Zaanga Owanie W Proces Refundacyjny Lekuunclassified

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Organizacje pacjentów a ochrona zdrowia w Polsce

Stasiewicz-Swinney¹

2022

Ochrona Zdrowia I Gospodarka. Przegląd Współczesnych Problemów Systemu Opieki Zdrowotnej

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“…Consequently, patient advocacy has an important role to play, especially in cooperation with experts and their medical societies. This is even more important in rare cancers such as sarcomas [ 1 ].…”

Section: Introductionmentioning

confidence: 99%

Global Patient Involvement in Sarcoma Care—A Collaborative Initiative of the Connective Tissue Oncology Society (CTOS) & Sarcoma Patients EuroNet (SPAEN)

Kasper

Schuster²,

Wilson³

et al. 2022

Cancers

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Sarcomas are a grouping of rare cancers with a wide variety of histological types that are difficult to diagnose and treat. This leads to many varying challenges not only for sarcoma patients, but also for doctors, researchers, and caregivers. Patient advocacy groups have an important role to play in rare cancers such as sarcomas, especially in collaboration with experts and their medical societies. To this end, patients and patient advocates from Sarcoma Patients EuroNet (SPAEN), a global network of national Sarcoma Patient Advocacy Groups, and medical experts from the scientifically driven Connective Tissue Oncology Society (CTOS) came together on 9 November 2021 at an official ancillary event to the CTOS 2021 Annual Meeting. At the event, representatives of CTOS and SPAEN jointly discussed gaps and challenges in global sarcoma care and management. This resulting position paper highlights the main findings and possible future steps.

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