The Power of Digital Medicine Data and Our Responsibility to the People it Represents
By Jared Hoyer
Actuary of the Future, July 2021
With great power comes great responsibility. I think about this proverb, also known as the Peter Parker principle, almost daily now. Not just because I have re-watched a lot of Marvel movies during quarantine, but also because I have seen how the shift toward digital medicine in recent years has brought with it many opportunities for health care. Digital communication devices and analytical methods are being adopted by more physicians, patients are growing more comfortable with remote and computer-assisted diagnosis and treatment, and an increasing number of companies are investing in health apps and digital pharmacies to provide digital medicine.[1]
What do all these innovations have in common? They all result in an increase in readily available health data. This newly acquired wealth of knowledge gives us the opportunity to restructure our health care system, strengthen the areas that up until now have been lacking proper support, and address many flaws that have been very recently brought to light by the COVID-19 pandemic. All this data, however, does not come without risk. It is very easy to interpret data as simply a collection of numbers in a table or on a screen, and yet it is so much more than that. Those numbers represent people, and those people have a right to both equity and privacy. Now more than ever, coming off this global crisis that has continually challenged all of us, we need to make sure we are responsibly handling this data while using it to make the universe of health care better for everyone.
First, let's discuss the power that digital medicine data gives us. This data provides us with nearly endless possibilities on both the analysis and the application side of care. From an application standpoint, data that comes from digital communication devices can lead to more efficient delivery of care. Devices such as wearable heart monitors, Bluetooth-enabled scales, and Fitbits or Apple watches all provide health measures of patients and can transmit them back to providers. Armed with this information, doctors can identify issues such as high blood pressure or elevated blood sugar in real time, leading to faster intervention or delivery of care.
These devices can also help monitor patients who are elderly or have chronic illnesses. This allows caregivers to remotely keep tabs on patients.[2] In emergencies where these devices detect that medical intervention is necessary, such as when a fall has been detected, both family members and health care workers can be notified immediately, and a response can be initiated as quickly as possible. Some care, such as physical therapy, can even be delivered remotely using wearable medical technology and sensor-guided exercise therapy. This can all help reduce inefficiencies such as patients not recognizing that intervention is needed, patients being afraid to visit their physician, or patients being unable to get an appointment in a timely manner. Reducing these inefficiencies will lead to better quality care and lower health care costs.
At the same time, being able to collect more data from more people in real time can support future initiatives in health care. Predictive models built off trends from the past can be updated with more current data allowing them to be more accurate, less speculative, and more representative of the current health care system. At the same time, new trends and models can be developed to prepare for events such as the next global pandemic. Make no mistake, pandemics are not going away. COVID-19 is likely to remain a problem in the future (although at low levels and only rarely causing serious illness).[3] The majority of emerging diseases and practically all pandemics are caused by diseases that spillover from animals into humans, including flu, COVID-19, HIV, SARS, Ebola and Zika.[4] While we cannot eliminate these risks entirely, we can use recent data to develop predictive models to get ahead of these risks, and we can equip our medical facilities so they are better prepared for future outbreaks.
Now, let's talk about the responsibilities associated with these new powers, so to speak. We need to ensure all health care professionals, from actuaries and analysts to doctors and product developers, are providing the same, if not better, discretion when it comes to this data. At a base level, we need to ensure that those who handle this plethora of data are doing so in the appropriate manner. This includes, but is not limited to, only requesting access to data that is necessary, encrypting unnecessary or personal details that could cause harm if abused or improperly distributed, and only sending data to others using secure channels. As more and more health care initiatives turn to digital medicine and telehealth services, we are likely to collect more data points from patients than we have before, making it very important to keep those definitions of “necessary” and “unnecessary” crystal clear for health care professionals.
At a higher level, it may be necessary to think about increasing digital security for health care companies that handle large amounts of data. Have you noticed an increase of phone scams during the pandemic? I know I have, and these scams are just the tip of the iceberg. The pandemic has created an upheaval in health care cybersecurity as the use of personal devices to conduct work tasks has boomed, and despite the dramatic growth in telehealth services, many health care organizations are still struggling to implement digital health initiatives in a secure manner.[5] While the use of personal devices for work can be monitored and will likely be reduced as people return to their offices, the issue of data security will remain. It may be necessary to implement more comprehensive training and security protocols for health care employees, and some companies may even consider allocating larger portions of their budget toward cybersecurity departments. All this digital medicine data is very beneficial and can be used to change the world of health care, but if it comes at the cost of privacy then that change may not be for the better.
If we want to continue to see digital medicine data grow in the future, we also need to attempt to build trust in a system that has not always inspired that feeling across its various demographics. Distrust of the health care system is relatively high for the general population in the United States and is strongly associated with self-reported poor health.[6] These patterns of distrust are causing a large amount of delayed or neglected care, which leads to those subsequent poor health statuses. While delaying or neglecting care may not cause adverse health status for everyone, it does still affect all of us because the health care system is a symbiotic system. The costs of the health care system are influenced by the health status of all of us, meaning that what affects one of us will affect all of us in the form of procedure costs, deductible and copay amounts, drug prices, and insurance coverages.
One example of an area that is lacking significant trust has to do with the racial inequities that currently exist within the health care system. We have seen these inequities for decades; communities of color have historically been underrepresented when it comes to both research initiatives and clinical trials. These inequities are really being highlighted by the COVID-19 pandemic. Among COVID patients we have seen significant racial disparities when comparing both morbidity and mortality rates. These disparities and inequities can be avoided by collecting and analyzing data evenly across racial communities, which may be easier now that acceptance and satisfaction rates for telehealth are rising, primarily among communities of color. A survey conducted by AARP in the spring of 2020 found that Black and Latinx individuals expressed more interest than their white counterparts in using telehealth for providing care to a loved one and for routine doctor visits.[7]
Similarly, a recently published UCLA report described how telehealth interventions like mobile behavioral health treatments and remote blood pressure measurements have proven successful among the Latinx community.[8] Further implementation of this concept could lead to less racial disparity in medical conditions and concepts that are highly correlated with blood pressure. This is just one example of how boosting trust can fuel the collection and utilization of digital medicine data. If more representative analyses could be conducted and their results shared in an open and honest manner, this could both strengthen public opinion of the health care system and encourage people to be more willing to share their data.
Another way to boost trust is for health care companies to increase transparency. A lot of people are nervous when they hear about their data being collected and used by big companies. They often do not know exactly what those companies are doing with their data, and that is terrifying to them. If attempts were made to try and reduce this fear, then people may be less afraid to share their data. Perhaps a medical wrist device should only be issued after the health care company clearly communicates that it will be used to collect blood pressure data and nothing else. Or, perhaps these devices could be set up so that the member can control what data gets collected and what it gets used for. We can all benefit from more data being shared and used, but assurances and safeguards need to be put in place first.
As COVID's grip on the world continues to weaken, it is safe to say that life will never be the same. The definition of what we consider to be our "normal" lives is being rewritten, and change is coming. The good news is that we can write that new definition and make it one that benefits us all. If we continue to encourage and fuel the data surges we are seeing from both digital medicine and telehealth, increase our efforts to protect that data in the name of privacy, and promote equal representation in our collection and analysis efforts, we can create real change. With the right data, we can build a health care system that is rooted in equity, quality of care, and transparency. If 2020 taught us anything it is that we can achieve any goal if we come together for the greater good. That is the health care system we all deserve, and the normalcy we should all have. Whatever our new "normal" becomes, whatever the future holds in store for us, we must never forget that with great power comes great responsibility.
Statements of fact and opinions expressed herein are those of the individual authors and are not necessarily those of the Society of Actuaries, the editors, or the respective authors’ employers.
Jared Hoyer is a data analyst with OptumLabs, working as a part of the Research & Development branch of UnitedHealth Group. He primarily uses his actuarial background to support the testing and implementation of innovations in health care. Prior to that he served as an actuarial analyst for Optum where he primarily worked in the Medicare Part D space. He can be reached at jaredhoyer@uhg.com.