Last week, I had the privilege of attending the Global Heart Hub Annual Summit in Dublin as a representative of Het Vrouwenhart Spreekt. It felt like a celebration. First of all, because everything was so well organised, but above all because it is a reward for my work as a patient advocate. I met old and new friends, and although everyone comes from a different country or culture, there is an enormous sense of recognition.
Every patient initiative starts with one patient: someone who believes things can be better, and who uses their own experience to improve the situation for other patients. This proces is often slow and comes with obstacles. Those obstacles can be frustrating, and every now and then I wonder whether they are worth the time and energy I put in. A worldwide meeting, where everyone recognises those same obstacles, gives you new energy. Global Heart Hub makes you feel seen and heard as a patient advocate.
Lessons learned
In addition to recognition and validation, the summit also yielded a number of new insights. Below is a selection of the lessons I learned from it.
Patient stories are more than anecdotes
A patient story is a form of data. Lived experience experts know things that cannot be found in any study or guideline. The emotional effect of a story is not a side issue either: it is a superpower. But do think about whom you want to reach, and with what impact. A story that convinces a policymaker is not necessarily the story that supports another patient.
Participation is more than a testimonial
Patient participation is much more than a quote at the bottom of a leaflet. Patients should be partners, not just be consulted. This applies to research and policy, but also to people's own care: they are partners in their own treatment.
Recognition across the world
There are many patient advocates, and each has their own story. Yet common threads run through them: misdiagnosis of women with heart symptoms is a worldwide problem, and it is even more pronounced for women from minority groups, such as African American women. It shows that we are still far from where we need to be.
A long breath and a clear narrative
A long breath and a clear narrative
What I'm taking home from Dublin
Every patient initiative starts with one patient, and Het Vrouwenhart Spreekt is no different. In my own care journey, what I missed most was the right information to make good decisions. That is why I want to sharpen my message in the coming period. I believe it lies in empowering women: informing them so they can take control themselves. Thanks to the summit in Dublin, I will do so with renewed energy.
Text: Annemiek Hutten / Het Vrouwenhart Spreekt
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