Science Matters: First Comes Data, Then Comes Facts

What good is data if we don’t use it? The COVID-19 Pandemic is a perfect example of just how unprepared our health care systems are to deal with sudden change. As of this writing, about 150,000 people in North America are dead largely because of our inability to collect and interrogate our health information. That’s inexcusable in a rich society where data is so readily available. We just have to look around to see how incredibly high the resultant costs are. Keep in mind these two questions: where is all our health data? And why isn’t it being better used?

Google, Amazon, Facebook and other digital entities know tons about us. Probably more than we realize. We allow it and the data is used to study the interests, the wants and the habits of literally billions of people. They use our data to entice us, to purchase items or to spend more time on their sites so that they might collect even more information.

A data company like 23andMe convinces us to learn more about our heritage and maybe more about our genetics, including health risks. We give them our DNA and some of our money and they tell us a bit about our relatives (who have also joined the club) and a bit about our relative health risks. Meanwhile, they have a treasure trove of DNA from millions of individuals from which to ask questions. Remember, we also give them a lot of information — more than just our DNA.

To my mind, all of that is terrific. Knowledge certainly is king, though I do still worry about its misuse. That by the way is not a reason to limit the collection and access to data, but rather a reason to establish intelligent and effective (read: easy to use) regulatory processes including potential punishment for their misuse.

Which brings me to the main objective of this piece. Why isn’t everyone’s health care data readily accessible for a whole variety of purposes and of course anonymized as  appropriate. In most instances, there would be no reason to know the specific identity of the “owner” of the data. Here are just a few critical questions that could be readily addressed:

If a person is sick or injured and needs emergency care in any hospital or setting, shouldn’t the “Emergency Physician” have immediate and complete access to their health care record?

If there is an outbreak of an infectious disease in a particular sector, shouldn’t this information be readily available virtually, in real time to all and especially to those who could take action to stem the spread of the infection?

Is there a relationship between mental illness, the use and/or abuse of narcotics and the rates of incarceration either within the healthcare system or even within the judicial system?

How effective are our public health policies in disease prevention and cost effectiveness?

How compliant are patients in terms of adhering to recommended treatments in terms of drug use or clinical follow-up?

What, if any, are the geographical and socio-economic issues associated with vaccination compliance?

These are just a few examples but they are critical questions that can have enormous impact on both the individual patient’s health, as well as the effectiveness and efficiency of the health care system. All require data and analytics which exist but are not used because of fatal flaws in access and system coordination.

Why is it so hard ? This is primarily because healthcare systems, especially in North America, have a number of systemic shortcomings. Within private or semi-private health care delivery systems, the entities often compete with one another, loathe to share data and, when push comes to shove, hide behind issues of privacy. Just as important, they fail to accept what is a pretty simple economic imperative. It is hard for the system (read: government) to commodify the benefit of a sophisticated health care data system and so the data remains in a largely private digital (even sometimes analogue) form, inaccessible to those who would benefit by its integration; namely the patient, the health care professional, the health care system (i.e. clinic, hospital and payers) and the researchers who are seeking avenues to make it better. 

The amount of data we now collect is immense. Unfortunately, with no central authority, or at least no authority willing to take responsibility for its use, the data sits largely unused. This represents an enormous waste and all stakeholders suffer. The patients don’t benefit and in fact may suffer from inappropriate treatment. The caregivers (i.e. physicians, nurses, pharmacists etc.) are less than effective and waste resources. The policy makers and payers spend more and more money while likely becoming less and less efficient. Healthcare researchers are thwarted by the lack of a system-wide single-sourced health database that they need to answer critical questions. Just think about the devastation currently occurring as a result of COVID-19 and our inability to source critical information.

The solutions are not particularly onerous since most of the data and analytics are already in place. What is missing is leadership. It requires a seamless coordination between multiple components of multiple healthcare systems. It will initially require resources to allow/force integration, these costs should drop quickly as the systems are in place. Then, finally, we would anticipate a fairly quick return on the investment in terms of improvements in usage across the healthcare system.

At this point, administrators generally throw up their hands and proclaim: “when have the costs ever gone down?” Really? These costs are probably minuscule when compared with the hundreds of thousands of COVID-19 patients who have lost their lives and many trillions — yes, trillions — of dollars that have been spent as a result of the pandemic. Why do so many of the simple things become so complicated ?

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Image courtesy of Unsplash (via Nasa)