Ensino da História: que conhecimento e que memória(s)?

Patient organisations’ views, motivations and experiences on patient involvement in cancer research: a pilot study in Portugal

“…Most of the organisations, when asked about its main activities and services, identified patient’s support and educational related ones as the most representative, which goes in line with the conventional understanding of a patient organisation’s mission and the findings of Amaro et al in 2015. 33 However, it is relevant to outline from our results that five of the seven organisations involved in research reported having taken the initiative to get involved, and four of those reported having had the initiative to develop the study itself. This suggests that these organisations either are not involved in research at all or, if they do, they are the ones who promote it.…”

“…Lastly, descriptive analysis of the Portuguese cancer-related patient organisations is presented. Previous works that analysed Portuguese patient organisations’ missions, activities, perspectives and communication strategies on a large scale 33 34 did not present a particular focus on cancer-related patient organisations neither a perspective on these organisation’s involvement in research and are probably outdated in face of the increasing interest and awareness on patient involvement among patient organisations and other stakeholders. 35 36 …”