No Decision About Us Without Us

I'm not sure how old this slogan is, but it's in any case still very valid, and more than ever needed.

A democratic principle

First, it appeals to the basic elements of participative democracy. If you are going to make decisions that affect or impact a group of people, it is important to also listen to them and hear their perspective at the least, and in the best of cases they are the co-deciders. The slogan has been used by the patient movement in healthcare to make sure that decisions in medical practice and health policy actually address the real issues that patients and their families are confronted with. This is unfortunately still far from being a reality in most European countries, let alone in the rest of the world.

The case of tampons

Second, it is also stupid from an effectiveness perspective. If you want decisions to be effective and sustainable, you have to really understand what the target audience is experiencing, so that your decisions match their needs and expectations. One of my former bosses often mentioned the fast-moving-consumer-goods company where the entire global marketing team for the tampons consisted of white males in their thirties. You don't have to be a genius to understand that this is not going to work. Yet apparently in healthcare this is standard practice. It is filled with people with no experience of the disease whatsoever whose decisions are at best based on scientific articles and experience but also on a lot of assumptions and best guesses.

So how does this work then?

As usual, the remedy is simpler if you identify the cause of the disease. The cause of the disease is the false assumption that only medical decisions and treatments will decide outcomes. No, patients are humans, with very diverse knowledge, conditions and contexts. Disregarding this leads to suboptimal treatment. Medical practitioners and health policy-makers know half the story. Patients know the other half of the story. Medical practitioners and health policy-makers should therefore have formal and agreed co-design processes with patient organisations. This will make healthcare much more effective and efficient. Help patient organisations to gain the right level of competence and skills to be an equal partner. This requires proper funding to start with, then clear and agreed co-decision processes, minimal service agreements and performance indicators.

In this way decisions are made with us.