Patients often feel that their experience of illness is not valued nor understood by others. However, there has been a growing recognition of the importance of the patient perspective and involvement in research, improving its methodology and outcomes. The European Medicines Agency has been involving patients' and consumers' representatives on their work since 2005. The “European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects” have been published in the “Annals of the rheumatic diseases” in 2011.
I was diagnosed with Juvenile Idiopathic Arthritis when I was 5 years old, back in 1977. Therefore, I have 40 years of experience of living with a Rheumatic and Musculoskeletal Disease (RMD), but no recollection of what my life was like “before” and “after” the diagnosis. I have learned to live and cope with my RMD, with a sense of being different from my peers. This sense of “uniqueness” was only disrupted when I realised that my experience of illness was quite common to other persons with a RMD. I can still remember my fascination, in a Patient Reported Outcomes workshop, by discovering that our experience as patients had a bigger relevance that the one we usually conceive.
Then, I felt the need of understanding the research process and specific jargon, so I could relate them with my knowledge on living with a RMD. Otherwise, any insight on the patient perspective would be “lost in translation”, due to an inability to establish a correspondence between the scientific terminology and mindset regarding the disease, and the experience of illness and sickness by the individuals. Training opportunities were also recognised as desirable by the above mentioned EULAR recommendations, to increase expertise and understanding of research methods and to promote the patients' self-confidence on their contribution to research.
The Patient Research Partners (PRP) training by EULAR, in 2013, was the first step towards a better understanding of what could be the role of patients and on how to provide a meaningful input from the patients' perspective into research processes. It was followed in 2014 by the training provided by European Patients' Academy on Therapeutic Innovation (EUPATI) for Patient Expert on the Medicines Research and Development Process. This expert-level training was organized in a mixture of independent e-learning coursework and face-to-face training events over a 14-month period. The syllabus involved six modules: Discovery of Medicines & Planning of Medicine Development, Non-Clinical Testing and Pharmaceutical Development, Exploratory and Confirmatory Clinical Development, Clinical Trials, Regulatory Affairs, Medicinal Product Safety, Pharmacovigilance and Pharmaco-epidemiology, HTA principles and practices. Additionally, in 2016, I have attended the 1st EULAR course on Health Economics in Rheumatology.
In the meantime, my background as an anthropologist led me to become interested in Medical Anthropology. Between 2007–2015 my academic research (MA Phil. and PhD) was oriented towards a specialization in Anthropology of Health, with a special interest in Anthropology of Pharmaceuticals.
Based on my personal experience, on this lecture I will focus on the challenges of the role of the PRP trying to fill the gap between the mindsets and practices of different stakeholders.
Navigating through different meanings of symptoms and treatments, the educated patient representative must act like a translator, decodifying the biologic impact of the disease and intervention over the experience of illness on the everyday aspects of living with a RMD. The biggest expectation and challenge might be to bring these aspects forward, as relevant for the other stakeholders, since they shape individual values and patient's preferences.
Although recognised as having a pivotal role, patient's involvement in research may be limited by tokenism or by ineffective patients' participation. Patients' involvement is now a requirement and an added value to any project. But, is the project team ready and willing to listen to patients? Are PRP duly involved in the project, or are they just expected to be recipients without any input of their perspectives into the development and implementation of the research?
The knowledge and education acquired to perform our task enables us to understand science enough to communicate the patient experience in a meaningful way, improving the research. Our added value is, undoubtedly, our experience with the disease, our understanding of the individual values and preferences shaped by the everyday aspects of living with a RMD. We should be taken more seriously, for the benefit of science and patients.
Disclosure of Interest None declared