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

OBJECTIVES: To characterise Portuguese cancer-related patient organisations and analyse their views, motivations and experiences on patient involvement in cancer research. DESIGN: A multistakeholder group, comprising patient representatives and researchers, codesigned a questionnaire after a literature review, online sessions and collaborative mind maps. In May 2021, a survey was conducted among representatives of Portuguese cancer-related patient organisations, focusing on four dimensions: experience in cancer research; perception of its outcomes; motivations and expectations on patient involvement in research; and organisation characteristics. PARTICIPANTS: Twenty-seven representatives from Portuguese cancer-related patient organisations responded to the questionnaire, corresponding to a 64% response rate. RESULTS: Among the surveyed organisations, 26% have participated in clinical studies. Their involvement occurred in few stages of the research process and, mostly, with low levels of engagement. They showed 'great interest' in participating in most research steps, although this is not reflected in a high perception of influence over these same steps. More than half claimed to have contributed to the increase in patient recruitment and to a better understanding of informed consent by patients involved. Ensuring that research results are more aligned with the true needs of patients is the greatest motivation. Also, our results suggest that the organisation's number of employees and its integration into a European/International network play a relevant role in patient involvement in research. CONCLUSIONS: This study provides the first in-depth characterisation of Portuguese cancer-related patient organisations and their views, motivations and experiences on patient involvement in cancer research. Most importantly, this study revealed that most of these organisations 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.

Role of Portuguese community pharmacy and pharmacists in self-care.

Portugal recognizes the importance of self-care in its policies and has been actively engaging in health literacy and citizen empowerment. The current National Health Plan for the period 2021-2030 clearly mentions the need to "take greater advantage of the network of community pharmacies throughout the national territory, in favour of the health of the community, from the protection and promotion of health, through health literacy, to the prevention and early detection of disease, and the aggravation of chronic disease, among others". There is recognition of the role of pharmacists and community pharmacies. However, more needs to be done to promote intersectoral collaboration, particularly as community pharmacies are private entities but can nonetheless support the public national health service. Community pharmacies assisted many individuals during the pandemic to test suspect cases free of charge. The fight to end AIDS and viral hepatitis is another example where community pharmacies promote self-testing and ensure efficient screening and referral to diagnosis and treatment. Portugal has already moved to reimburse community pharmacies for services with some of them in areas of self-care including COVID-19 testing. Nevertheless, future challenges include making community pharmacies sustainable. Taking into account that community pharmacies are private entities that can supplement the public health service just as any other provider, it is essential to review payment models, referral mechanisms and access and integration of information from other partners in primary and secondary care.

The social value of pharmaceutical interventions, the Portuguese contribution to sustainable development.

This commentary focuses on a description of solidarity initiatives developed by pharmacists in different practice areas. These are varied initiatives which contribute to improve the life of human beings in a wide range of formats with one common vector, the pharmacist's involvement. Each of the initiatives described is related to the sustainable development goal it contributes to, whilst also referring to its link to international health policy documents, mostly issued by FIP. We expect this commentary further contributes to boost such initiatives in other parts of the world.