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The active involvement of patients in oncology research.
Ganz-Blaettler, Ursula; Liptrott, Sarah Jayne; Tolotti, Angela; Cefalì, Marco; Aeschlimann, Christine; Vilei, Simona Berardi; Colombo, Ilaria; Hatziandreou, Evi; Kosmidis, Thanos; Linardou, Helena; Pfau, Rosemarie; Sgourou, Stavroula; Sessa, Cristiana.
Afiliación
  • Ganz-Blaettler U; SAKK Patient Advisory Board, Effingerstrasse 33, 3008 Bern, Switzerland.
  • Liptrott SJ; Oncology Institute of Southern Switzerland, EOC-IOSI, Via A. Gallino 12, CH - 6500 Bellinzona, Switzerland.
  • Tolotti A; Oncology Institute of Southern Switzerland, EOC-IOSI, Via A. Gallino 12, CH - 6500 Bellinzona, Switzerland.
  • Cefalì M; Oncology Institute of Southern Switzerland, EOC-IOSI, Via A. Gallino 12, CH - 6500 Bellinzona, Switzerland.
  • Aeschlimann C; SAKK Patient Advisory Board, Effingerstrasse 33, 3008 Bern, Switzerland.
  • Vilei SB; Fondo Nazionale Per La Ricerca Svizzera, Wildhainweg 3, 3001 Bern, Switzerland.
  • Colombo I; Oncology Institute of Southern Switzerland, EOC-IOSI, Via A. Gallino 12, CH - 6500 Bellinzona, Switzerland.
  • Hatziandreou E; FairLife Lung Cancer Care, 18 Napoleontos Zerva Str., 16675 Glyfada, Greece.
  • Kosmidis T; CareAcross Ltd, 1 Kings Avenue, London N21 3NA, United Kingdom.
  • Linardou H; 4th Oncology Dept. & Comprehensive Clinical Trials Center, Metropolitan Hospital, Ethn. Makariou 9, Neo Faliro, Athens 18547, Greece.
  • Pfau R; Lymphome.ch - Patientennetz Schweiz, Weidenweg 39, 4147 Aesch, Switzerland.
  • Sgourou S; 4th Oncology Dept. & Comprehensive Clinical Trials Center, Metropolitan Hospital, Ethn. Makariou 9, Neo Faliro, Athens 18547, Greece.
  • Sessa C; Oncology Institute of Southern Switzerland, EOC-IOSI, Via A. Gallino 12, CH - 6500 Bellinzona, Switzerland. Electronic address: cristiana.sessa@eoc.ch.
Cancer Treat Rev ; 130: 102822, 2024 Sep 02.
Article en En | MEDLINE | ID: mdl-39276429
ABSTRACT
The aim of this review is to provide an overview of the status of patient/public involvement (PPI) in oncology research, including definitions, regulatory aspects, ongoing clinical activities in different countries, achievements and difficulties. The 10-year activities of the Swiss Group for Clinical Cancer Research (SAKK) Patient Advisory Board are described, illustrating challenges faced and solutions in daily practice. Even though clinical data are still limited, it appears PPI has great potential for development in oncology. The drive for precision medicine, activities of patient organizations, pharmaceutical industry interest, and strong support from regulatory agencies, are facilitators to integration of PPI throughout the drug development process. Despite the availability of guidance documents providing recommendations for the implementation of PPI, lack of human and structural resources, training for patients / caregivers and healthcare personnel, and lack of collaboration among stakeholders are some of the main barriers reported. More rigorous reporting of PPI in clinical studies is needed, including the methods to evaluate the impact of PPI and in the representation of patients as partner.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: Cancer Treat Rev Año: 2024 Tipo del documento: Article País de afiliación: Suiza Pais de publicación: Países Bajos
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: Cancer Treat Rev Año: 2024 Tipo del documento: Article País de afiliación: Suiza Pais de publicación: Países Bajos