John Milton, the English poet, wrote these lines in the 1660s in his epic poem Paradise Lost. It was a time of failed revolution, religious repression, and endemic plague sweeping through the land where there were no vaccines, effective protective measures, or intensive care units.
I am often reminded of his words, and they give me hope. Thankfully today in Switzerland few of us know the terrible suffering of those who have lost loved ones or are chronically ill as a result of the pandemic. Recent discussions have been about whether we can go skiing, or if the trams will still run. For most people SARS-CoV-2 is an inconvenience rather than a life-threatening illness. Nevertheless, the pandemic is causing huge suffering in the world, and it helps me to remember that pandemics are nothing new, that normal life will indeed return.
That’s why, in the middle of the pandemic, I and three companions launched an initiative for more patient-centred research into rheumatic and musculoskeletal diseases. In May we established a foundation called RheumaCura. You can find out more on our website.
At the time of founding RheumaCura I wondered if we shouldn’t be addressing this immediate crisis. Milton reminds me, that these times will pass, and the challenges to solve will still be there. Better treatment and finding cures for rheumatic diseases is still important and there’s much to do.
Our quest for more patient involvement in health care does perhaps have a link to the current crisis. Overcoming the pandemic is slowed because not enough people have been vaccinated. In Switzerland a vaccine is readily available for all, but a significant proportion of the population do not want it. This may be now leading to an unparalleled health crisis in Switzerland, which according to the health experts would be entirely avoidable. If we’ve learned one thing from Covid-19, it’s that the public health authorities are powerless to beat the pandemic if the people do not support their initiatives.
The reasons why people refuse vaccination are complex, but one important aspect must surely be trust. Mike Ryan, head of the health emergencies program at the World Health Organization stated recently: “What’s shocked me most in this pandemic has been that absence or loss of trust,” he said of people’s unwillingness to follow the advice of public health leaders and the containment policies set out by governments.
People who don’t have confidence in health experts or substantiated scientific evidence, or democratically elected government authorities, or the media, will not have faith in information provided by these sources. They succumb to fears without any scientific basis. The American scientific journalist, Tara Haelle, writes thought provokingly about the reasons for vaccination hesitancy, about its long history, and why nobody should be surprised.
However, even among the vaccinated majority, a common perception is that health care is strongly influenced by the pharmaceutical industry, health care providers such as gigantic hospitals, and corporatist bodies such as the associations of health insurers. The Swiss system is highly complex, hierarchical, and not easily understood by outsiders. Patients often feel like objects in a huge and powerful industry, where they are by definition vulnerable. More trust and cooperation could be generated in the health service if it were closer to its citizens. An obvious way to do this would be to listen to and involve them more, and enable them to be more active.
A health care system in which the patient’s voice is heard at all levels would provide better care, and furthermore, it would also increase trust and encourage compliance with public health care advice. Patient compliance with health care advice is always essential for the best outcome, and we have never seen it so clearly as in the pandemic.
Read more about our vision and work on the RheumaCura website
Milton, J (1674), Paradise Lost (2nd ed.), London: S. Simmons