Patient associations and clinical oncology research: how much does a patient’s voice really matter?

ABSTRACT

Background: New trends are emerging in clinical research, such as patient empowerment and an active role in influencing health and research ethics. Patients’ involvement is considered pivotal by stakeholders and institutions because they can channel the voice of those they represent, empowering their starring role in the different research activities.

Objectives: To obtain an overview of the real involvement of Italian patient associations in clinical research.

Methods: In January 2019, the Working Group ‘Clinical Research Coordinators’ of the Italian Association of Medical Oncology spread an online questionnaire consisting of 16 questions on the active involvement of patient associations in clinical research.

Results: The involvement in clinical research working groups, in the organization and implementation of specific activities and training initiatives is very limited (21.7% in both cases), as well as the active involvement in the conduct and/or definition of clinical trials (0.3%). Moreover, few associations (15.2%) have joined projects on patient involvement in clinical research in collaboration with other associations.

Discussion: Although the current involvement of the associations may have been somewhat underestimated, there is no doubt that much more can be done in terms of training and identification of common objectives between patients and professionals.

KEYWORDS:

• Patient
• associations
• research
• oncology

Acknowledgments

Preliminary results of the present study have been presented during the 2019 Annual Meeting of the Italian Association of Medical Oncology (AIOM).

Declaration of interest

The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Reviewers disclosure

Peer reviewers on this manuscript have no relevant financial relationships or otherwise to disclose.

Additional information

Funding

This paper was not funded.