Engaging Patients with Facts (our new weekly blog)
From my patient experience, I have come to appreciate that patient engagement exists on a spectrum from being informed to being empowered. As we all jointly attempt to socially distance ourselves to protect the vulnerable and our healthcare workers, we may be watching the numbers of newly infected, the number of deaths in our country, and across the world.
Having all of the available facts is important to me. I have trained to be a researcher. To methodically seek out the answers to research questions, to be objective, to be analytical, and to base my conclusions on scientific evidence. Additionally, being organized, planning in advance, and enabling others is a critical personal role for me. My sense of control comes from being informed.
It has taken effort to learn more about the biological underpinnings of COVID-19, understand who the most vulnerable are aside from the elderly, what underlying conditions may affect patient response, and how I might protect family members including those with chronic conditions. The information I have independently sought I hope, will prove to be invaluable to protect my family members.
However, many people understandably may not be able to sift through the vast amounts of data generated each day. Fear of the unknown can be crippling. To that effect, there is value in generating data that tangibly makes sense to people to comprehend where infections are spreading in their local context, the correlation between testing and the increase in new infections, categorizing infections and deaths by age, categorizing deaths by underlying conditions, how people who have chronic conditions regardless of age can protect themselves and how COVID-19 may render these people to be particularly vulnerable. For me, facts and information enable a sense of control and might enable others to feel that same sense of control (whilst respecting the requests of public officials).
While this data is emerging slowly-understandable given how rapidly the situation is changing every day, it is still worthwhile for us to analyze how we can better engage each other, leveraging the power of technology and the crowd, once this crisis passes. I anticipate that the sharing of these learning lessons will be of the utmost importance to manage future global crises. In the meantime, be safe and know that we will rise above this crisis.