Interview: e-Patient Dave on digital health and patient autonomy

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FHI editorial team

Jun 06, 2017 - reading time 7 mins

By e-Patient Dave deBronkart

Co-chair, Society for Participatory Medicine

After beating stage IV kidney cancer in 2007, Dave has become one of the world’s leading advocates for patient engagement. He works as a blogger, health policy adviser and international keynote speaker and is also the co-founder and current co-chair of the Society for Participatory Medicine

By e-Patient Dave deBronkartClick here to read less

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In this interview, e-patient Dave discusses key aspects of the healthcare transformation, like disease prevention, funding, and incentivization, from a consumer’s perspective.

Mature doctor having a discussion with patient

E-Patient Dave, health technology academic, author and keynote speaker, believes we are in a defining moment in healthcare history as health systems adapt to the digital age.

Is healthcare spending allocated to the right places? Is there a good balance between expenditure on prevention and treatment?

The growth and structure of healthcare spending in the US is unsustainable, and we’re finally at the point where things are starting to look like a crisis. The US health system has a major intermediary between the patient and the provider of care – the private insurance industry. Ironically, those intermediaries are the only party with the power to walk away from this relationship – to say “we’re not making enough money, so we’re withdrawing” – and those decisions are made based on whether the insurance providers’ business interests can be protected, or not.

Author Dan Munro wrote a great book called “Casino Healthcare”, which describes an annual lottery where patients choose insurance plans and too often end up discovering that what looked like a good option does not meet their needs. But there’s nothing they can do for 12-months until the next annual lottery when they can try their luck again.

As a result, we see people postponing treatment because they can’t pay for it; meanwhile, others are getting treatment that they don’t necessarily need yet because they do have the funding and are not sure if they will in the future. In both of these scenarios, the patient is not empowered to make choices and it’s money in the driving seat.

A truly perverse aspect of this lottery healthcare system is that there is no return on investment for an insurer to pay for prevention because any downstream savings will benefit a different insurance company.

Where do you consider the biggest waste to be in healthcare systems today?

Things that are done completely unnecessarily, for example, redundant repeat tests because patient data isn’t shared between care providers. It’s very common that if you move from one hospital to another, they will repeat the test because either they can’t get hold of the information, or they don’t trust the original results.

This lack of interoperability of data between systems is hugely wasteful but in countries where hospitals are run primarily as businesses, there’s no financial incentive to stop repeat testing. However, in several developing countries where healthcare is considered a human right, there’s a lot more reason to be efficient. For example, in Brazil, budget deficits and outbreak of disease have forced state governments to declare health system ‘emergencies’, and the region’s ability to deliver maximum results at the lowest possible cost is vital for the survival of the health system.

In the US, it’s widely known that healthcare costs significantly more per capita than the second most expensive country. Meanwhile, ironically, despite the high costs, outcomes are close to those of developing nations. Clearly, there is a massive inefficiency here. We spent $3 trillion on healthcare in the US last year. If a third of that is inefficiency, that’s $1 trillion of waste, and that waste alone is bigger than the combined annual revenue of Apple Computer, IBM, Dell, Intel, and the entire US auto industry.

Are we closer to the consumerization of healthcare?

We’re in the process of a cultural awakening in which our widespread assumptions about the role of health provider and patient in society are being re-examined. It will take one or more generations before the baseline expectation has shifted.

In the early 1800s we didn’t have a clue how the body worked. 100 years ago, it was virtually impossible for someone without medical training to have any useful insights into healthcare or medicine, so the idea of an informed and empowered patient was impossible. The internet has changed that because it has enabled information to flow on a colossal scale – I call this “information liquidity”.

Rather than the consumerization of healthcare, I prefer to think of it as a shift to patient autonomy. In order to have autonomy, the patient should be able to change paths if they want to. I have no autonomy if I can’t take my medical records to a different doctor.

Something that’s emerged in the past five years that was never possible before is that digital health information is increasingly enabling people with a health problem to act on their own with or without a physician’s cooperation.

For example, was developed by people with type 1 diabetes who hacked their health technology devices to monitor their condition and wrote a simple piece of software to help manage all the data. In essence, they have created an artificial pancreas to manage glucose levels. Diabetes happens to be a disease where almost everything the patient has to manage involves interacting with data. I think #OpenAPS is a harbinger of a new era that will evolve at some speed to facilitate patient autonomy.

How should stakeholders in the healthcare eco-system work together to push for change, and encourage patients to manage their own health?

Changing behavior is undoubtedly a huge challenge. A study of population behavior over generations by Christakis & Fowler demonstrated that people’s health status tracks significantly with their social connections. On factors like obesity and smoking, the behavior of people you’re associated with socially is a more significant predictor of your health than genetics.

I’m hopeful that there is a sociological tipping point as more individuals shift to healthier behaviors that will have a follow on effect.

What are your views on gamification and other forms of incentivization tactics?

A lot of people leap to cynicism prematurely and don’t see the potential of new technology. Precision medicine for example, is undeniably accomplishing things that just 10-years ago were unimaginable. It allows doctors and researchers to accurately predict what treatment and prevention strategies will work best for an individual. Although it is not accessible yet to most cancer patients, it’s obvious that something new and real is happening here, but it’s not yet clear what. And yet some observers scoff, saying it’s over-hyped.

I think the same applies for gamification. I know from personal experience that after years of struggling with my weight, despite my best intentions, I have been helped (I’ve lost 40 pounds and become a runner) by the encouragement I get from apps.

I anticipate that methods of gamification will be studied for their effectiveness and this information will be used for things that we might not be able to foresee at this stage.

Sometimes I think the sceptics are people who don’t have any skin in the game and are just looking for investment opportunities. That’s exactly the wrong kind of person to ask, for advice in improving care. As I said on stage at Health 2.0 last Fall, “the difference between analysts and activists is that if we identify the cause of a problem but nothing changes, the activist gets mad, while the analysts sell more reports about it. If you want to know what really needs to change, ask an activist, not an analyst.”

As the healthcare industry undergoes the transformative effects of technological innovation, it seems that cultural shifts still need to be made across the board before any real benefits can be felt. On-demand services, constant communication and the ubiquity of smartphones have changed patients’ expectations of healthcare services. Simultaneously, the rise of wearable technology and gamification could be the catalyst for greater focus on preventive care. This year’s Philips Future Health Index has shown that attitudes are changing. Progress is being made across the world towards a form of healthcare that “much like the internet, is ‘always on’ and integrated into daily lives.”

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