How would it feel if people were talking about you behind closed doors and you were not allowed to be in the room? Forbidden to listen and forbidden to speak, yet knowing you’re the topic on the agenda? 

How would it feel if people were not only talking about the risks of medicines but also making key decisions without involving any patients? We are the ones taking the risks so why are they not discussed with us? And why are we not part of the decision-making process? We don’t want (legal) representation on these commissions. We need direct participation. 

Consider how it feels when we must pay full registration fees from our own pockets to attend congresses that discuss our disease? Unlike others, we can’t rely on companies, hospitals or research institutes to cover these costs. 

We are the lived experience experts

Healthcare operates like the pet food industry – others make decisions about our doctors, hospitals, diagnoses, and treatments. This needs to change, as quality falls far short of what is possible. The reason? Those making the decisions are not the lived experience experts – we are. If healthcare stakeholders really want to serve patients, they must work with us and consult us on every decision. We are the experts of our own disease, we bear the risks, and we understand our needs best. 

Grant patient advocates free access to your congresses. Include them as keynote speakers and panellists. We know what we are talking about. 

Include patient advocates in the commissions that decide on market access for medicines and other treatments. After all, we are the ones who bear the risks. 

Put patient advocates on hospital boards – not just advisory boards. We all know advisory roles carry no real power and when the board meets, they alone decide what is good for the hospital. An effective board brings together patient advocates, doctors and financial expertise. 

If healthcare truly aims to be patient centric and serve our needs, then work with us and take us seriously. 

We’re done with good intentions and superficial smiles. 

Peter Kapitein
Patient Advocate Inspire2Live