One of the most intimate and dynamic aspects of being human is health. If we have it, we are able to live life to its fullest. If we don’t have it, it is a lot harder.

It is also one of the areas in which we feel the most powerless. From “taking care of ourselves” in relation to healthy behaviours, to seeking to find the right interventions for sickness and disease, it is not easy to find the switch to control our health.

My husband and I have had to take more control than we intended. Our two children have a genetic condition called pseudoxanthoma elasticum (PXE), and early in their lives we realised we would have to do it all. We are an extreme case: as lay people we learned to discover the gene, create diagnostic testing, set up a research consortium and lead clinical trials. We do not consider ourselves heroes, we instead think no one should have to do this. Access to health and treatments for any disease should be a human right. In the 23 years since we began, we have learned that the health systems are not set up to serve people. Their focus is on profit, institutions, cost-saving, and other misaligned incentives.

It is time to insert our voices into the decisions that are being made about our personal health

In almost all aspects of life, we all play a much bigger role in making sure that the service or product is best for our needs. Not so in healthcare. It is time for us to stand and take our place. It is time to insert our voices into the decisions that are being made about our personal health, and the health systems with which we interact, and tailor them to what is best for us and our communities.

Let’s not settle for mediocre or appalling services - neither simple inconveniences nor major errors in healthcare delivery. Demand excellence. We should demand the best, just as we do in working with our plumber, our taxi driver, or our elected official. All are here to serve us, and our healthcare providers and institutions must do the same. This is a matter of life and death.

 Be collaborators in our own health

If we citizens ask for what we need and for what is our right, then in the future we will not be ‘patients’, nor will we be patient. We will be collaborators in our own health. There will not be a power differential – meaning we will not feel afraid, inadequate or generally lost, when we need help with our health. We will find multiple ways to receive the support and resources we need to live healthy lives. We will not have to take heroic measures just to get what we or our loved ones need.

As easy as it is for us to listen to the song of our choice, or order a book online, we will easily access tools to live healthier lives, and solve the problems associated with the diseases that take a toll on our lives. This is a simple matter of feeling better, living with more possibility of enjoying life, and generally have more time and energy to love those with whom we journey in this life.

You can watch Sharon speaking about this subject at our event The Future of People Powered Health 2017 by replaying the live stream.