Covid-19: so much data, so little time…digital is the answer
I am shocked that in this digital age, in the US, paper continues to be the method of choice for Covid-19 vaccination tracking and tracing.
Friends in the medical profession who have received their first dose each have a paper card, one that doesn’t quite fit in their wallets. “Don’t you have an app with vaccine info, a place to enter your response, and info on your next vaccine schedule?”, I asked. The answer has always been no. An opportunity to collect and share data has been lost.
After receiving the vaccine, my parents were told to “scan the QR code for more information”. If they don’t know what that is, or believe their phones don’t do that, then another opportunity to collect and share information is lost. And although they received the same vaccine, these were from different locations and they were given two different sets of literature!
I have received both my vaccines from a nearby county, not affiliated with my primary care provider who knows nothing of when I had either vaccine, nor which vaccine it was. Worse yet, should I have side-effects or any adverse reactions in the near or long term, my provider has no way to tie that back to my vaccine. Of course, that puts the responsibility on me, but how many others are concerned about the lack of follow-up data being collected and shared?
Turning high volumes of data into insight
The clinical trials associated with the Covid-19 vaccine, at the time of writing and according to the World Health Organization, total 3,937 with 1,425 of the studies worldwide cited with a recruiting status of “Recruiting”. So there is data collection happening; but how can governments, healthcare providers and even the public contribute to the need for worldwide data-sharing for the purposes of understanding this terrible virus, its impact on short and long-term health, its response to treatment variations or co-morbid implications? And the list goes on.
Organizations should consider how they are going to recover necessary vaccination information for better understanding of the long-term effects of the disease, as well as the treatment approaches and vaccine effects.
While there are rules for the reporting of adverse events, there seems to be a gap in the data being collected for long-term monitoring of less than life-threatening events, maybe long-term health and wellness implications.
Organizations should consider how they are going to recover necessary vaccination information for better understanding of the long-term effects of the disease
Engaging citizens and communities
McKinsey has stated: “This monumental global effort has shattered the record for vaccine development: the fastest previous vaccine project, Merck’s mumps vaccine, was four and a half years in development (1963–67).”
While we’ve seen unprecedented speed in moving from protein discovery through clinical trials that are resulting in vaccine production, clinical trials and studies continue, with 4,836 studies worldwide covering 991 conditions. Community engagement and the use of digital data collection tools, from apps to wearables to remote monitoring devices, will surely serve to inform researchers and drive ongoing interventions.
Governance, trust and confidence
Citizen applications and portals should be strongly considered as part of the overall solutions to support clinical trial and public health reporting to best manage recovery from Covid-19, as well as prevention of future complications or adverse events from the vaccination.
Citizen trust in use of data is, of course, critical to how data can best be harnessed. Experience shows that the public does engage in data-sharing when they can see that there is benefit to them. Now is the time to raise public awareness of data governance and compliance to build confidence. In an age of unprecedented potential from the growing volumes of data, it is surely on the critical path to ensure this is harnessed to give communities every chance as the fight continues to pave the way for a Covid-free world.