March 16, 2020

Why Don’t We Know More About the Coronavirus Risks?

Why Don’t We Know More About the Coronavirus Risks?

Recently, I had a heated debate with a good friend about whether our government officials are overreacting to the Coronavirus crisis.  His response was logical and compelling: “We don’t know about the scope or seriousness of this virus, so we have to take more drastic steps to control it.”

His remarks begged this question:  Why do we not know more than we do?  Several thoughts came to mind:

  • Our health records on any one individual are scattered across multiple providers and multiple software platforms.  This is not accidental or coincidental.  This is the result of a deliberate effort by software providers like Epic to keep their health information from being exported to other systems and to prevent information from other systems getting into one of their records.  It is great short-term benefit for them, but not good for patients, providers, or public health.
  • The Commons Project, a next-generation version of the Dossia platform I helped co-create and deploy between 2006-2016, is designed to create an architecture for a fully interoperable, comprehensive, lifelong, portable patient health record.  We may not be able to get the doctors to move their records from one place to another, but we can empower patients to control and manage their health from their mobile phones and tablets.  I am honored to serve as a Trustee of The Commons Project Foundation and will be actively promoting what we only partially succeeded in accomplishing with the Dossia health record.

  • We are so obsessed with risks to privacy that are infinitesimal that we refused to create a fully anonymous national health registry to be able to learn in real time or even after the fact what conditions people have.  For example, as this quote from an Italian web site reports, the Italians have figured out to a degree we cannot at this stage who is dying from the Coronavirus:

"Rome, 13 Mar 19:12 - (Agenzia Nova) - The people who died of coronavirus in Italy, who did not have other diseases, could be only two. This is what emerges from the medical records examined so far by the Higher Institute of Health, according to the President of the Institute, Silvio Brusaferro, during the press conference held today at the Civil Protection in Rome. "The positive deceased patients have an average age of over 80 years - 80.3 to be exact - and are predominantly male," said Brusaferro. "Women make up 25.8%. The average age of the deceased is significantly higher than the other positives. The age groups over 70, with a peak between 80 and 89 years. The majority of these people are carriers of chronic diseases. Only two people have not been found to be carriers of pathologies at the moment", but even in these two cases, the examination of the records is not concluded and therefore causes of death other than Covid-19 may emerge. The president of the ISS has specified that so far "just over one hundred medical records" have been received from hospitals throughout Italy."

Italy has begun to look not only at the ages and genders of those who have died, but the chronic diseases they had prior to contracting the virus.  They are only 100 health records into their analysis, but they have done a better job than we in figuring out who is at risk. Unfortunately, they are doing a national lockdown, because they have no good data on the broader population to determine where the most prevalent disease hotspots within the various communities might be.

Public health became a credible government discipline in 1854 when UK physician John Snow isolated a cholera outbreak to a single contaminated drinking water supply and those who accessed it.  London did not do a citywide lockdown. Dr. Snow diagnosed and solved the problem at its source. We are incapable of doing the same thing here and are destroying our economy because we lack more granular data.

In the Monday, March 16, 2020, issue of The Wall Street Journal, USC Associate Professor Neeraj Sood has published an Op-Ed piece in which he proposes nationwide statistically valid random testing for the Coronavirus, so that we can get more representative data on whose is getting infected and whose symptoms are migrating to a more serious level.  It is an imperfect way of addressing the problem, but it is far better than the non-random testing occurring today, which will tend to overstate the risk and draw in those who have more serious symptoms.

We know that far more people have the virus than are in confirmed cases, but we do not know how many, who they are, or what the rate of progression to a serious illness level would be for the entire infected population.

The statements by Dr. Fauci and by our Surgeon General make it clear that they believe that the situation “will get worse before it gets better” but we do not know what that means.  If we had 20 million cases equivalent to a mild flu outbreak, we would not be taking the drastic steps we are taking. However, we do not know what a higher level of cases means for us.  That is preventable and fixable, but we need the political will and the imagination to address it.

  • What we also need is better data on whether there are anti-viral treatments that can be applied to the vast majority of the serious cases.  Michael Milken of the Milken Institute, a leading funder and thinker on infectious diseases and acute conditions, has suggested that we focus, in parallel on anti-viral drugs as well as vaccines, because we can get them into the market faster, have more tools to keep people from dying or languishing with serious illnesses or from panicking if they contract the illness.

He noted that we successfully controlled the death rate of HIV/AIDS, even though we have yet to develop an effective HIV/AIDS vaccine.  I agree with his recommendations.

  • Finally, we need a more robust and freer use of telehealth solutions.  Data can be collected and tracked remotely to reduce the strain on healthcare providers, so that they see only the people who need in-person care, not others who are part of the “worried well” or have mild cases of the virus. To do that, we need telehealth providers to be free to do everything technology allows.  Today, despite the provisions of the national emergency declaration, there are too many antiquated prohibitions on reimbursement for telehealth. These have to change fast.

As I have posted on LinkedIn, there are serious short and long term consequences from enforced social isolation, especially for older people who suffer from mental health conditions and other chronic diseases.

I would hope that this crisis will force us to move more aggressively to comprehensive health records, the creation of national health registries, telehealth solutions to reduce the strain on in-person providers, and anti-viral drugs.