I have done two patient peer reviews for the British Medical Journal. The first, done before the EUPATI training, was deemed a very valuable contribution and they wrote to ask if they could use it as an example of excellence. But the 2nd, I was able to do better (and to understand the full range of input I could give), thanks to the EUPATI training. This is not paid, but reviewers are given access to the BMJ archives for a year, as payment in kind.
Thanks to calls for participants coming from EUPATI, I have undertaken some reviewing work for two pharma companies exploring how to produce good plain-language summaries on clinical trial results, in English. This is the perfect marriage of my skills: patient advocacy, language, editing for accessibility and now medicines R&D knowledge (https://www.eupati.eu/patient-involvement/patients-involved-patient-feedback-plain-language-summary-results/).
In December 2016, I attended a one-day think tank in New York organized by a pharma company, on risk-benefit communication to patients. I was asked to provide input as a EUPATI fellow, from the EU perspective, but influenced by my own disease, of course. I was given 20 minutes to present. This was a very enriching, interesting and stimulating day, with speakers from academia, and one other patient speaker.
I have signed up with the EMA as a patient expert and attended a webinar briefing patients on how the process works, but to date, they have not contacted me for disease expertise. I’m looking forward to the day when they need me.
I’m now on the executive board of EUPATI Switzerland, my national platform, and am becoming increasingly active, since the EUPATI training is complete. In January, I attended a forum held by the Swiss Clinical Trials Organisation to explore the topic of ‘A more patient- and research-friendly future thanks to dynamic consent and e-consent?’ and wrote the report on the event, afterwards. This was a great opportunity to revise my EUPATI learning, and to find out what is happening in the field of consent where I live.
My advocacy for endometriosis continues. I am a regional representative for a national patient organization, Endo-Help. I am involved in creating links between patients and the hospital, attending hospital events, participating in online support, doing media appearances (e.g. TV http://www.lemanbleu.ch/fr/News/L-endometriose-une-maladie-taboue.html) as requested, sharing resources in English with local associations whose patients speak French or German, mostly. Our local hospital, and the one where I had my last endo surgery, has just opened an endometriosis center of excellence, which is wonderful news for patients. I attended the launch as one of the two patients present.
March is endometriosis awareness month and, this year, a wave of volunteers ran the information table, which for a couple of years, I did all alone. Many of them thanked me for setting the example of what it is to be a patient advocate and for encouraging them to get involved. It is absolutely wonderful to see a community of endometriosis patients growing in confidence, disease knowledge and cohesion. The hospital held a public awareness informational evening, at which I did a short presentation on the patient organisation I represent. And that Saturday, on 25 March, I was one of 200 people to the first ever endo march in Switzerland. And true to Swiss style, it went like clockwork. Beautifully and smoothly. I wish to use my EUPATI studies and to seize the opportunities that cross my path to do EUPATI proud. It’s tough to fit it all in, as I also have a full-time job and my illness makes me very tired, but we all do what we can. When I’m not a dormouse, I’m a keyboard warrior and an activist. And putting together a summary like this makes me proud, because many little steps make up a long journey.