‘Looking-the-other-way’ – failing to notice the unprecedented and perhaps unimaginable changes that are in fact happening.
Director of REshape
Over the course of the past months we’ve seen the establishment being genuinely surprised at the outcomes of polls, referenda and elections. Much of what – mainly afterwards – in the media is being analyzed as easily predictable, if only one had listened to what has been said.
Neglect is the word that comes to mind. Neglect on climate change. Although climate scientists are virtually unanimous in saying global warming is true, there are a number of ways groups are trying to undermine real scientific evidence. (In 2013–2014 only 4 of 69,406 authors rejected Anthropogenic Global Warming).
Neglect about BREXIT of many in the UK who for years argued the added value of the European Union, and neglect about the impact of “Leave” forces mobilizing Euro-sceptic forces via social media and campaigning.
Neglect of the obvious undercurrent in the US of people with clearly a different mindset and values than the establishment at the coasts and in the big cities.
The same easily could happen to healthcare and medicine as I sense a lot of ‘looking-the-other-way’ – failing to notice the unprecedented and perhaps unimaginable changes that are in fact happening. If nothing changes we could end up like in the movie The Day After Tomorrow,” where overnight the climate changed completely … just as America woke up November 9th to find itself in a completely upside down reality.
All of these cases illustrate the impact of looking away without realizing what’s happening, and thus not doing anything about the root cause. And it is here where I see resemblance with what is happening in health(care) nowadays on the debate of digital health.
Although we live in a hyper-connected world, health(care) & medicine is not noticing or not responding to the expectations of users (patients, family and informal care in my definition) on how they want health(care) delivered to them. A Dutch longitudinal e-healthstudy for the 4th year showed the gap in perception. 75% of patients asked stated they really wanted to use digital health whenever they can, but almost never have been offered options by their doctor or nurse. Healthcare professionals on the other hand stated “patients haven’t been asking us for digital health, so they don’t want it, or are not ready for it, yet”.
Image credit : 20th Century Fox
That’s an interesting divide to take a deeper look into. The terms e-health, m-health and Health 2.0 to me are part of the same development towards delivering health(care) in a digital format, thus digital health. Whereas we are trying to de-silo health(care) in everyday practices, a new divide looms when we tend to handle all those as different developments and as something new (including the finance and reimbursement of it).
To me digital health is just another form factor of delivering care, and probably is here to stay as routine health(care) and should be treated as such. Just as insurance companies don’t procure electricity for hospitals from power grid-companies, it doesn’t make sense for them to negotiate digital health suppliers other than via the regular institutions. (An exception would be if the regular institutions don’t offer e-health recommendations to patients. In that case, the insurance company might.) It is at the core of our REshape Center at Radboudumc to explore possible use of technology to empower patients, family and informal care. Together with companies like Philips we work towards an eCo system to combine all those eGo systems (looking inward only).
Dr. Madara’s keynote quote has been broadly picked up by the media and is being used on a daily basis by the critics, but – just as in the US election – the impact of the misleading smear gets little coverage.
The number of papers on digital health is increasing, but still with most of the technology only 12 or 24 months old, one can not expect a PhD thesis on it. It takes years for a technology to mature into stable usage patterns, and then at least two years to be studied and published … and by then reality has changed, as evidenced by the recent widely ridiculed article about fitness trackers in JAMA itself.
The WHO is also creating awareness by setting the stage for an “authoritative, critical and independent overview of knowledge about the appropriate, transdisciplinary methods and applications in e-health”. They explicitly added “include contributors from developing countries who typically do not have the opportunity to publish in international journals. It is likely that significant experiences and knowledge about many e-health issues do not make it to the mainstream scientific literature, as implementers and researchers involved in these projects may lack the resources, skills and/or contacts necessary to access these international communication channels.” Many digital tools already exist in developing countries adding value to the often rural processen over-there, but lacking the resources to publish about it.
It’s clear we need more evidence of the effect of digital health tools. Although the number of papers on health etc are rising rapidly, it will take us some time to conclude what works and what not. New combinations are to be made from different backgrounds like behavior science, data analytics and even ethical questions. Even studies that showed no clinical or economic benefit as the one our friend Dr. Eric Topol conducted, nonetheless “didn’t add any burden economically. A lot of people thought, if people have access to their data they’re going to end up tapping more into medical resources [i.e. they anticipated increased utilization of services, ie. higher costs]. Well, we certainly didn’t see that. So that was encouraging, but obviously we would have liked to reduce the need for emergency rooms and office visits and hospitalizations. That could still be out there, but this is just the beginning of studying that question.”Topol continued.
Eric recently took part in a Fortune brainstorm on “Doctors Offices Maybe Become a Thing of the Past” . (the video starts at that point but certainly is worth scrolling to start)
One of the other promising aspects of digital health next to the better user experience for patients, e.g. not having to commute back and forth to the doctor, is the aspect of going from spot-measurement into more data points. Those data points also are being taken in the comfort of patients’ own homes. I am curious about whether this will impact our knowledge of mechanisms of disease.
We all use digital technology, logistics, retail through digital channels; healthcare is one of the last branches to enter this arena, even though the targeted groups are changing: the first Rolling Stones fans admitted to nursing homes, and Generation-Y is increasingly becoming part of people living with chronic conditions.
Meanwhile I sometimes feels like medicine is still using sticks to make fire. We’re facing almost doubling of healthcare demand and I don’t expect any substantial increase in budget from governments, so figuring out smart ways to cope is key. Even if technology only could help 20% of the population, for those who want and are able to, this could free up resources for those who are in need of more time and care.
I’d like to dare you, providers, to step out of your comfort zone and start exploring with an open mind, one patient at a time, or to appoint at least one colleague in your team to do so. Step up to your patients, their family and informal care and start the conversation on the use of digital tools.
And as for you, the people, you can help by asking your doctor or nurse next time if there are any other options than to come to the clinic. (Remember, doctors are saying you’re not asking for it, so why should they offer it?)
Even if patients do travel to the clinic, there’s a lot to improve: in the current setting as well: giving patients a ride can have a very positive impact on both patients and the organization, like Circulation is partnering on with Uber.
Time to accept the patient lives in this ‘Milky Way of connections’ that we as healthcare-providers are just a little star or planet in. The often mentioned triple-helix : university-industry-government relationships lack the most important player of all; the patient. So lets work in the quadruple-helix toward better health, no matter how this is being delivered. The perk of digital is the data can be re-used’ or recycled with consent of the patient.
Image credit : creative commons
Let us not end up like climate change deniers and the pollsters and politicians that were blind to changing reality. Let’s make sure we don’t end up suddenly with health(care) disrupted from outside. Instead, let’s take wise action so it’s (again) transformed, incorporating all the knowledge and experience available right now.