Guest blog post authored by Paola Kruger (patient expert) and edited by Gary Finnegan (Editorial Coordinator, Patients Focused Medicine Development)
After my diagnosis, I became a patient expert. Here is what I learned.
I was diagnosed with multiple sclerosis (MS) in 2010 and, like many other patients, that’s when my journey in the world of patient engagement (PE) began. I enrolled in the EUPATI Patient Academy and graduated in 2016 so I am an EUPATI Fellow. This was the start of my “career” as an expert patient.
I have been, and still am, a member of several scientific boards advising pharma on patient-relevant issues. I also train patients and patient associations on how to get involved in research and where patient input is particularly relevant along the R&D of medicines development continuum.
I think education is the first step in PE. I am a registered European Medicines Agency (EMA) expert, and a speaker at many national and international events on the importance of involving patients in healthcare decisions with a particular focus on medicines development. I am currently involved in two research projects as a PE expert and I am a member of the Patient Engagement Group of the Horizon2020 funded project MULTI-ACT, led by the Italian MS Society. The focus of the project is the development of a PE framework in neurological diseases.
I am a member of the ISPOR Patient Roundtable and as such I attended the ISPOR Europe Congress in Barcelona in early November. There is still a lot to be done to properly engage patients in HTA, however, at the Congress we had a chance to speak to both DG SANCO and NICE and it was clear that things are moving along: the concept of PE is becoming more and more to the forefront of these institutions’ agendas. Both DG SANCO and NICE recognized the value of PE in clinical research and they involve patients in their activities.
Engaging patients in research is particularly important when we talk about Real World Evidence. Patient experts allow the identification of the best way to engage patients and, most of all, to understand how to engage them in a meaningful way.
I think that the concept of PE is rapidly evolving. However, a sticking point is that different countries apply this concept at different speeds: some are more advanced while others are lagging behind. That’s why it is paramount to have Europe-wide initiatives like PFMD and PARADIGM. We need common standards we can all refer to in order to make PE systematic in all areas of research. We must also train more patient experts to be the right reference point for all stakeholders that wish to engage patients in the right way.
Nevertheless, I am an optimist and seeing how much work has been done so far and how much patient advocates, activists and experts are achieving I know we will get there, it is just a matter of time!