Patient participation in research

September 24, 2024. Amsterdam COS meeting
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For Congenital Melanocytic Nevi, the outcomes were established in the OCOMEN study (Outcomes COngenital MElanocytic Naevus), in collaboration with Naevus Global. This study determined which characteristics should be recorded in research, according to the standardized COS (Core Outcome Set) procedure. Marjolein van Kessel has been invited to give a presentation on patient participation during a COS meeting.

Introduction

I was asked to give a presentation about my involvement with OCOMEN, my experiences with it, the challenges I encounter, and how patients can be better involved in research. In my presentation I shared my personal experience in the form of a ‘patient journey’, to make it more individual than the schematic version we previously developed. I then explained how Naevus Global has evolved since 2013 to where we are today.

My personal patient journey

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My son Dafnis was born at home in 1998, something that is quite common in the Netherlands. Soon, there was uncertainty about the spots on his skin and where we could go for advice. The general practitioner knew the correct name but didn’t know which symptoms were associated with it. He thought the spots would disappear within five years. We were referred to the Amsterdam UMC via the Diakonessenhuis, while the midwife inquired at UMC Utrecht. They didn’t think the referral was urgent, but Amsterdam UMC wanted to see him immediately.

Four weeks later, many nevi were removed by a plastic surgeon. At that time it was thought the risk of melanoma was high. Now we know this is incorrect, then we had no statistics.

Dafnis underwent three surgeries, but after the third, he developed symptoms that I now recognize as epileptic seizures. While feeding, milk had likely entered his lungs, leading to an emergency hospitalization with pneumonia. No one, including his doctors, knew that neurological complications could occur. He recovered from the pneumonia, but the seizures persisted, characterized by moments of absence and pauses in breathing. These were not recognized, and he was given medication for reflux instead.

Eventually, the seizures lessened and disappeared. He grew up normally, although he had poor motor skills, drooled, and had difficulty speaking. He received speech therapy and special education, but no link was made to possible neurological complications – complications now known to occur in congenital melanocytic nevi.

At the age of 13, he suddenly started suffering from severe headaches, unexplained vomiting and balance problems. He underwent three brain operations, but six months later he died of melanoma on the meninges. He was 13 years old.

Importance of patient participation in research

Patient participation in research is of great importance because it provides a deeper understanding of how patients experience their condition. By actively involving them, you gain valuable insights from their perspective, and the research can be better aligned with the lived experiences of patients. Patient organizations play a crucial role in this process, as they are in contact with a broad network. Collaboration with such an organization strengthens the research and ensures greater relevance and impact.

In addition, a patient organization that advocates for patient interests raises more awareness about the condition. This promotes the dissemination of research results, giving them broader recognition and potentially leading to improved care or policy changes.

Challenges

An important challenge in research is better informing patients about the importance of collaboration and clarifying the strategy being followed. Using accessible materials, such as the simple brochures Anne Fledderus once developed for our community, can help with this.

Additionally, it is crucial that the established outcome measures, as determined in OCOMEN, are actually implemented in research. The patient association plays an important role here as well. For example, I connected Nevus Outreach, who are just starting a registry (NOOR), with Anne Fledderus so they can make use of these outcome measures.

Another challenge is that patient representatives work entirely as unpaid volunteers, which can limit their involvement and continuity.

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