How the Pandemic Empowered Patients

Making the most of advances in technology and following the data, Americans learn to trust themselves as much as their medical providers

By Jim Weiss

Financial markets bewildered analysts the past year. Stock trading on apps and proselytizing on Reddit message boards created wild price swings and to-the-moon momentum for companies like GameStop, AMC Theatres and Hertz. But the disruption in equity markets also leveled the playing field, giving new power and influence to individual investors once reserved for powerful hedge funds and institutions.

The healthcare sector is not immune from this new dynamic. Accelerating a trend already in motion, the pandemic has advanced an era of patient power. Untrained individuals are a newly formidable force in public health, and increasingly are impacting policy, treatment and protocols for well-being.

Americans have adapted to major disruptions during Covid to become their own best advocates for care. They are making decisions that a few years ago would have been the sole domain of a professional caregiver, whether your physician’s assistant, your internist or the head of the Centers for Disease Control — not to forget your own healthcare insurer.

Harnessing cutting edge technology – from patient portals to wearable devices that measure our heartbeat and sleep patterns, to oximeters monitoring the oxygen level in our blood – individuals have become uber-fluent in medical vocabulary, health statistics, diagnosis and even therapies and treatments. Consider the success of streaming TV show “Diagnosis,” in which New York Times columnist (and Yale-trained physician) Lisa Sanders draws on the crowdsourcing wisdom of her reader-viewers to crack mysterious illnesses that might stump even medical experts.

Consumers with smartphones now know more about their purchases than Consumer Reports told them a generation ago. But note that in today’s fluid, meme- and social media-driven news cycle, what seemed like settled science a month or even a week ago may be debunked or overturned, forcing all of us to take no one’s word as sacred.

That was especially true in the early days of the pandemic and subsequent vaccine rollout, when Americans discovered they could not passively wait their turn, or depend on a hospital or government web site to nail an appointment. The logistical maneuvers and workarounds many of us went through to secure a coveted shot or Covid test was reminiscent of a Grateful Dead concert, when fans learned to search out scalpers in order to gain admission. In the Covid era, we are all Deadheads. 

This has all occurred at dizzying pace. The timeline for vaccine development upended conventional perspective. Historically, it took up to 10 years for new modality treatments to obtain approval; the development and launch of highly effective vaccines by Pfizer, Moderna and other innovators happened in barely a year. 

To borrow a line from a bygone retail ad, an educated consumer is medicine’s best patient. Which lessons patients learn can be vitally important. But although medicine is a profession, it is also a marketplace, and its leaders should treat patients as customers — not one-directional outputs.

The pandemic taught Americans that their trust in medical establishment and government health agencies was not sacrosanct. The CDC and Food and Drug Administration — understandably overwhelmed at times by the pace of evolving data – revealed intermittent fallibility, and contradictory public messaging hasn’t helped. Now we’ve learned that even some of the country’s leading scientists and researchers may have expressed doubts about the efficacy of masking or seen evidence in early 2020 that the coronavirus might have originated through genetic engineering. 

This is not a zero-sum equation: healthcare professionals are as crucial as ever, and patients gain self-empowerment by knowing what questions to ask to advance a path towards self-care. For instance, individuals testing positive for Covid are now encouraged through social media and ad campaigns to ask their doctor about treatment with monoclonal antibodies. The information loop goes in both directions.

While much vaccine hesitancy has been overcome, there remain sizable pockets of the U.S. population holding out or as yet unreached. Such resistance could lead to more infections and slow the pace of progress needed to finally get past the crisis.

Which should not be shocking. Even the obvious step of taking life-saving prescriptions for antibiotics or insulin is ignored by many. The CDC estimates the financial costs of medical non-compliance could be as high as $300 billion annually, and has chronicled a host of other adverse impacts including more hospital admissions, increased mortality and higher health care costs. And national lockdowns meant many Americans avoided normal preventive care and procedures for the past 18 months.

Healthcare improves with more information sharing

Advocacy of transparency’s benefits can help. For a decade, the Open Notes movement has pushed providers to share written records with patients. In one study, Open Notes found that patients with immediate access to their provider’s notes were 60% more likely to adhere to medications.

Providers should take more advantage of information-sharing platforms. Using solutions that comply with the Health Insurance Portability and Accountability Act, medical practices can easily gather data, share patient documents and collect signatures. One example is Seqster, a technology that lets patients connect medical records, DNA and wearables on a single, secure platform. The ability to instantly aggregate health data and share with caregivers creates can improve the accuracy and timeliness of care.

Similarly, patients should go beyond doctor’s office visits and acute care settings to pursue data and digitized health tools that will help them measure and monitor their own biometrics. Blood pressure, heart rate and sleep patterns can all be easily monitored from home.

Remote decision making might also benefit from being tethered to care providers. In the United Kingdom, the National Health Service has had success with a telehealth system that sends text messages to patients with reminders and tips on everything from managing diabetes to dealing with pulmonary disease and breast feeding.

Stateside, Kaiser Permanente piloted a similar outreach program for heart attack survivors. Patients had an 88% lower risk of dying from cardiac-related causes when enrolled within 90 days of their attack. And another U.K. program succeeded in expediting the discharge of older patients from hospitals by assessing their needs in the home environment, reaching a total of 10,000 patients in one year and saving between 30,000 and 40,000 acute-care bed days.

Federal rules finalized this past April outline regulations that will make it easier for patients to shop for care and seek second opinions. The rules offer a concrete approach to patient-provider partnership. Among other things, patients will have greater ability to access such information as lab results, health records and scans.

My Own Wake-Up Call

As it happens, I know a thing or two about self-care and health industry innovation.

I worked on marketing for the launch of Metamucil in the late 1980s to help lower cholesterol, and devised a campaign for Pepto Bismol to prevent ulcers. Working with Genentech in the early 1990s, I trumpeted the introduction of some of the first biotechnology drugs for cystic fibrosis, and human growth disorders and cancer. I even helped populate the domain gene.com to capitalize on the proven impact of the newly understood human genome.

On the self-help front, I helped introduce an amazing pill containing a micro camera that Katie Couric swallowed on NBC’s Today to raise public awareness of colon cancer following her husband’s death from the disease.

Irony alert: As involved as I was in promoting good health and quality life sciences, I wasn’t living it. I was overweight — not just hefty but obese at close to 320 pounds. I was pre-diabetic and had unhealthy habits that were putting me on track for an early demise. It got bad enough that I opted for bariatric surgery and lost 110 pounds, but my lifestyle still was no role model. 

Then, in my late 40s, I saw a classic warning sign — blood in the stool. I had colon cancer. Fortunately, it was discovered early enough, but I needed a crash course in self-care. It was only then that I learned that my grandmother had had colon cancer and I realized the genetic hand I had been dealt.

One lesson I’ve internalized is that so many important decisions occur outside of a clinical setting: eating, exercising, medicating. Monitoring these can be improved via wearable fitness devices such as Fitbits, Apple Watches or (my own preferred) Oura Ring. 

Building Patient-Provider Partnership

But building a true patient-provider partnership is not as simple as taking a pill and calling in the morning. The most recent forays into the healthcare sector by Big Tech illustrate the enormous potential, and complexity, of this new interplay. Apple CEO Tim Cook has declared that the company’s greatest legacy will be its contribution to human health. Central to that is Apple’s goal of disrupting what it calls the “363” model of care, where patients might not see a doctor for 363 days a year, only visiting when a problem arises. To realize that, Apple is providing a medical service of its own, with an app and interactive data from iPhones, Apple Watches and a new app as part of the mix. 

Similarly, Microsoft’s recent $16 billion deal for Nuance Communications Inc. is another milestone. Microsoft will be marketing Nuance’s natural language speech-recognition software to healthcare providers. Such a partnership will allow patients to interact with providers more like personal speed dialing and less like the century-old platform where they had to defer to professional operators making connections by plugging cords into switchboards.

For patients, the number one goal for health remains clear: Stay out of the hospital. Goal number two: Embrace all the tools available to stay on top of your own care and treatment. For providers, seize this new opportunity to better serve your newly empowered clientele.

Despite the enormous loss and suffering caused by Covid, the disease has given us new knowledge and power to ensure greater health for the future. Ignorance is simply no longer an option.

Jim Weiss is founder and CEO of Real Chemistry, a global health innovation company focused on making the world a healthier place for all. He can be reached at [email protected]