Council Post: The Era Of Patient Gathered Health Data

Mark narrowly survived a rare and life-altering illness followed by a long recovery. He is CEO at Sparrow Bioacoustics.


Healthcare has historically been an inconvenient and expensive service to access. Even basic or primary care has numerous barriers—not the least of which is booking appointments, taking time off work, waiting in waiting rooms, etc. The effects are magnified if you happen to feel ill or are symptomatic.

At the same time, millions of people in the U.S. live in medically underserved areas in states like California, Texas and Illinois, making this process almost insurmountable. It has long been held that the future of healthcare includes more of it being available from the comfort of your home—reserving in-person clinical visits for more serious cases.

A big part of this is the idea that patients should be able to collect their own health data whenever they need it, have control over it and be able to share it with medical professionals in a secure and reliable way. Patient-gathered health data (PGHD) is defined as “data created, recorded, and gathered by and from patients” often involving technology such as wearable devices. It’s the kind of information you would expect to be gathered during a physical exam.

Outside The Doctor’s Office

Back in 2011, Dr. Gregory Abowd gave a keynote to the American Medical Informatics Association on the future of PGHD. He predicted that most of the information that a doctor might use to determine how a patient is doing would be collected outside of that doctor’s office.

Since Dr. Abowd’s seminal prediction, wearable devices and specialized connected devices that record vitals or help you manage conditions have flooded consumer markets. At the same time, there are now more ways that people gain electronic access to things like their medical records, test results and X-rays. Up until recently, however, the adoption of PGHD to support clinical decisions by doctors was relatively slow. The pandemic did a lot to move healthcare institutions, medical practitioners and insurers forward on this front. By way of example, over 500 health institutions now support Apple Health Records.

The promise here is that patients will ultimately have greater custody over their medical information, carrying it with them wherever they go. The ability for a patient to transmit this information instead of waiting for in-person visits or forwarding the information to specialists means better access with fewer steps. It also puts the patient in more control, something we are now used to in our consumer lives.

Using Smartphones

The question remains, however, how will patients record and share things like a lung sound or heartbeat in a way that is medically useful and accessible? The widespread adoption of smartphones has hit an inflection point that is relevant to this question. Analysts today put smartphone adoption in the U.S. at 88%, with almost 75% adoption in the 65 and older demographic. One study stated the average person touches their phone 1,500 times a week. Today, there are no comparable physical technologies that we interact with more. In addition, the evolution of these devices has also been guided by our ability to use them as proxies for our own senses: ultrahigh-resolution video, stereo audio recording, selective noise canceling, physical feedback, geolocation, gyroscopes and more.

These features combine to help us connect our physical reality with the digital one. It means our smartphones can help act as an extension of a doctor’s ability to touch, listen, see and measure us from anywhere. Consumerization and convenience have driven huge changes in how we manage finances, make important decisions and shop; healthcare is next. In fact, a recent study shows that “60% of consumers expect their healthcare digital experience to mirror that of retail.”

People using their personal devices as medical instruments to assess their health does not seem far-fetched, and it is poised to become as normal as using a banking app instead of standing in line. I believe that patient-gathered data applied correctly will invariably fuel intelligent systems that can help both patients and doctors make quicker, sound decisions.

Looking Forward: Merging Home And Work Life

As home-life and work-life seem to increasingly merge, it is impossible to talk about the benefits to the individual without considering the impact on employers and the workplace. If health monitoring can be delivered on-demand at home, the same will become true at work, and you will soon be able to track and correlate the effect work has on your health.

When moving toward this, we need to make sure that the data is owned by the individuals, and in this way, it can be used to advocate and shine a light on a company’s occupational health policies with possible implications on employer liability.

But democratizing elements of the screening and assessment process into the consumer’s control can seem daunting. Could the medical system get overwhelmed with consumers demanding attention because their phones told them they were sick? Will employees gravitate to medical software on their devices to document the effects of work-related stress?

Considering this future, policies on the use of self-collected health data at the workplace need to evolve sharply. At the very least, employers cannot continue to treat health as something people only worry about on their own time. A population’s health is heavily tied to the economy’s health, so people’s ability to be more proactively involved is essential. Embracing forward-looking policies here can have significant positive impacts on workforce health and benefits programs.

It’s easy to argue that consumers should leave the gathering and use of vital signs and other health data to professionals. Anything else would simply be confusing or harmful to the patient; however, many people with chronic illnesses or conditions already manage their own care to a large degree every day. For them, getting the best outcomes depends on being proactive, having the right information and tracking the progression of their conditions themselves.

Businesses can use these examples to bolster their response to employee health, creating policies that will put them at the forefront of patient-gathered data.

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