It's Time to Un-Circle the Wagons - Jumping Back into the Policy Discussion

It was never my intention to go three years without writing a post on this blog. Back in March 2020, I lived in Snohomish, Washington, effectively ground zero for the COVID pandemic in the United States. The first death in the U.S. from COVID was at a hospital 20 min from my house. The nursing home that raised the alarm with so many elderly deaths was a mere15 miles away. The first case of COVID identified in the wild by the Seattle Flu Study was a teenager who attended high school down the road from my house. COVID had been circulating in my community for weeks and, as we know now, it was too late to stop it. When the first lockdown came that month, I had to make a choice. My teenager’s life was about to come to a traumatic and abrupt halt - swim team, water polo, their first job as a lifeguard, friends (we were already in online school), tutoring at the elementary school - it all ended when the lockdown hit. As an epidemiologist, I recognized that we were in for a long and painful journey. I knew intuitively that I could not spend my energy the same way I had before the pandemic. Like everyone else in the world, I had to reprioritize my life. I closed down my writing and most of my consulting practice. I chose to circle the wagons and turn my energy inward at home. 

Now that the worst of the pandemic is mostly behind us, I have started to feel the desire and inspiration to write and engage in my policy space again. A lot is happening in patient-focused policy and I’m excited to jump back into the discussion. I haven’t been entirely under a rock these past few years. I spent most of 2021 and 2022 working on a compilation of information about how patient voice is included by regulators globally. More on this work will be covered in a future post (or posts). I am also engaged with colleagues and companies who are working on patient advocacy and patient preference. What I have not done is be loud about my thoughts. That is about to change. 

My hope is to create more dialogue around what we are attempting to do - particularly here in the U.S. - to get patient input into regulatory decision-making and hold up a mirror to what we are actually accomplishing (or not). I feel it's important to not just throw our pompoms in the air and cheerlead anything that looks like it could be patient-focused. That is performative and doesn’t move the needle. Rather, we should seek good policy that helps patient experience inform and influence regulatory decision-making effectively. There are many ways to do this, and many ways not to. I do not pretend to know all the answers. But, I would like to create more critical thought and discussion around these issues to better understand them and contribute to improved patient-focused policy - policy that makes a substantive difference in people’s lives. 

I hope you will join me in engaging in these discussions. I may have been quiet for a few years. But, my brain was still working on these topics. It’s time to get these ideas out of my head and into the world. It’s time to un-circle the wagons.