We are happy to share that a new paper has been published in BMJ Open, shedding light on Portuguese patient organisations’ views, motivations, and experiences on patient involvement in cancer research!
 

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

➡ https://bmjopen.bmj.com/content/14/1/e077444.full

In a nutshell:

🔍 The study offers a comprehensive overview of cancer-related patient organisations in Portugal, covering essential elements such as organizational structure, financial sources, member profiles, activities, services, communication channels, and collaborations.

🔍 Beyond previous studies by systematically evaluating these organisations involvement across 16 different R&D opportunities, providing a nuanced perspective on engagement levels throughout the R&D process.

🤝 This study was a multistakeholder cocreation, having been ideated, designed and conducted with and for patients since the very beginning.

📊 Only 26% of Portuguese cancer-related patient organisations have ever participated in clinical studies, primarily at limited stages of the R&D process and often with low levels of involvement.

📊 Most importantly, this study revealed that most cancer patient organisations in Portugal show great interest in being involved in different R&D stages to ensure that research results are aligned with patients’ needs. Their motivation should be turned into greater and more meaningful involvement in practice, so that the cancer community can benefit from the outcomes of truly patient-centred research.

✍️ Authors: Constança Roquette, Sofia Crisostomo, Tamara Hussong Milagre, Rute Simões Ribeiro, Ana Rita Pedro, André Valente

Congratulations :)