Expert patients: the future of healthcare in your hands

As the population ages and healthcare demand grows, it seems only reasonable that the burden of care be shared. As diagnostic technology and treatment improve we see an exponential increase in the number of people living into old age with multiple illnesses.

These people have received a gift born of research, hard work and the age, but with their longevity come responsibility and a host of new challenges. They must take on a larger role in managing their own disease. That includes me and you.

The growth of the 'expert patient' is one that is set to grow. These are patients who know their disease, and take an active role its management, helping choose their treatment and plans. Regardless of the knowledge and expertise of any physician, they can never truly know a patient as well as the patient themself. When it comes to how a patient experiences disease we can only use general rules to recognise and treat, and the subtleties of personal perspective are lost on us. This is a shame.

Disease is a multifaceted entity, with its nature comprised of symptoms and effects which are best known to the patient. Years of research and learning in university and postgraduate examinations cannot rival seventy years of advanced training in themselves. So why should physicians value the growing enterprise of these patients? Often they provide early expert insight into their own condition and truly know what is best for them, regardless of what our textbooks or guidance says. Expert patients improve their care and help us to learn.

One fine example is a young man I met recently, who suffered with recurrent pneumonia. He tended to present after a long period of mild illness with sudden, severe deterioration. Although his story did not fit my textbooks, his experience of his own illness prompted me to treat him more aggressively, for which he was thankful. Without his expert advice and forthcoming manner, this would not have happened. He may have come to harm if he had not taken such control. I was grateful to learn.

Becoming an expert patient is as simple as taking responsibility not just for your health, but for your disease. This can be as straightforward as taking careful note of what happens when you begin to get a chest infection, to know your signs and seek help early. It may be as clear as knowing when your depression is creeping back and seeking help sooner, or knowing when something just isn't right and having the courage to speak up for yourself.

As a man who suffers from illness myself, my greatest ammunition in the ongoing battle has been careful analysis and characterisation of the nature of my own demons. I have, through trial and error, begun to spot early the signs of deterioration and make changes to improve my health. I learned that becoming an expert in my own illness, like the young man was in his, makes you a safer and healthier person. I also learned that placing this responsibility in the hands of my patients makes them feel more in control.

So I challenge you to do the same, and help us build a society that is not just healthier and wiser, but an example of a patient-led healthcare system that we can all be proud of.



Ben is a young NHS doctor in the Southwest. His interests including neurology, health communication, and medical ethics. He is also an avid advocate of compassionate care and quality improvement, running a project in the southwest around medical humanities.