“The system only changes if we empower the one person who cares about their health the most – the patient. Over the next decade, I believe people will become the CEOs of their own health.” Vinod Khosla
Self care is the future for the simple reason that nobody wants to be a patient. Of course we want care when we need it. We want to be well. We want a good life. We want independence. We want control, and we certainly don’t want to need care nor to lose control.
And becoming a patient, for better or for worse, implies giving up control. Being a patient implies there are gatekeepers, there are limits, there are constraints, there are decisions we can’t make for ourselves. We can’t always get the access we want. Talk to patient advocates and you’ll find people fed up with the lack of control, lack of ownership and the lack of help from the health care system.
While we won’t ever get all the care we need from patient groups and new digital self care tools, we’ll always need professionals to make decisions that are deeply complex and require a deep understanding, there’s still a great deal we can get from our peers and our new tools and the list is growing every day. Many conditions simply don’t need deep expertise, they only need to answer “what do I do next?” around a condition.
The desire for action and control drives our internal motivation, but, along with them, there are now also strong technological and societal forces driving an emerging self care movement.
Here are the major forces at work:
1. Internet of Things (IoT): Sensor costs are becoming very inexpensive. They will become commoditized. Telemedicine is growing, and, as payment aligns with outcomes, it will be routine. In 5 or 10 years, in a non-emergency situation, why will we need to go to a “bricks and mortar clinic”?
You may need to get a scan, or you may need a real physical exam, but less so every year. The world of medicine become more and more digital every day as measurements are enabled for the consumer. Philips recently made the move in the wearable marketplace from fitness to chronic disease with a $600 system including a watch, scale, BP monitor and thermometer. This is a big step, and foreshadows a self-tracking future for healthcare. More sensors are surely on their way to the home and mobile.
2. Shifting Risk: Patients and self-insured employers are looking for new ways to minimize their financial risks as plans move toward high deductibles and employers are looking for new ways to keep employees healthy and happy and looking for new measurements. It’s historically been very expensive to get data on populations, and even more difficult for data around individuals. For individuals and employers, to bend the cost curve, they need the best information available on what costs will be and how behavior affects costs and disease risk.
Say someone is diagnosed with pre-Diabetes. How much will will he have to pay for those Diabetes meds if he gets full-blown diabetes? Will he have to get daily insulin injections? When risk is personal, we can start to change outcomes and drive engagement. While some health is measured and influenced at the population level, including social determinants, health is still driven by individual decisions on a daily basis. We are driving toward individual risks as we get better at measuring. This will have big implications for insurers in the not-to distant future, and for individual rights as well. As we gather more information, when we get to very accurate predictions of risk for an individual. What will population-based insurance look like with all this information? We all need the right information to make our own decision on our financial and health futures. Laws governing individual risk will likely change as well.
3. Interoperability around the individual. It’s been a long time coming, but the recognition that patients must be the means by which health data is transferred is coming into the mainstream.
CIOs have indicated that relying on institutions, institutions that have neither the rights nor the incentives, to share health data might not be the right approach.
According to Dr. David Kibbe of DirectTrust,
“The real issue involves who owns the health information that is created by you and me, and about you and me, and who has the rights to view it, access it, use it, download it and move it around.”
Kibbe went on to say, ““We need a new and different national, maybe international, dialogue about how health data and information are centralized and de-centralized, about how to assure its privacy, about the use of encryption for security and about identity assurance,” Kibbe added. “Some of this is policy and some of this is social science.”
Kibbe gets it right on decentralization: decentralized technologies are allowing individuals the ability to track the information about themselves without a third party. Blockchain is being hailed as user-centric data store. Just as bitcoin is showing the promise of de-institutionalizing banks to protocols and distributed data stores, blockchain shows promise for other kinds of individual-centric data.
Don and Alex Tapscott have written “The Blockchain Revolution” which details how blockchain and related technologies will weave their way into many industries, driving decentralization of many currently centralized processes.This could be a core part of moving health data exchange to a truly individual-centric system. Bruce Boussard, the CEO of Humana recently confirmed this perspective, saying : “The promise of Blockchain is about putting the consumer at the center of health care, instead of the other way around.”
While Kibbe’s comments above were on the care delivery side of health care, big changes will be impacted on the research side of things as well. Eric Topol and John Wilbanks highlight in a recent Nature article that, even if we have easily given up personal data rights around commerce, we need to draw the line on the privatization of personal data around health data. Just as we control our own bodies, so must we control data about our bodies and minds.
4. Precision medicine. Precision medicine is information science, population health, value-based care and patient experience driven to the level of the individual. Although we tend to think of individual and population health as opposite sides of the same spectrum, precision medicine is the path we’ll follow to get to all the others. Take a look at the recent award for Scripps to understand Precision Medicine:
“This range of information at the scale of 1 million people from all walks of life will be an unprecedented resource for researchers working to understand all of the factors that influence health and disease,” NIH Director Dr. Francis Collins said in a statement. “Over time, data provided by participants will help us answer important health questions, such as why some people with elevated genetic and environmental risk factors for disease still manage to maintain good health, and how people suffering from a chronic illness can maintain the highest possible quality of life. The more we understand about individual differences, the better able we will be to effectively prevent and treat illness.”
Providing the right care to the right individual requires a complete picture of that individual. Precision medicine is the the nexus of the combining forces of medicine becoming and information science while being directed to the unique contexts of a person’s lifestyle and genomics.
In June, Healthcare IT News and HIMSS released a study and the headline, “Hospitals rank population health, value-based care, patient experience as top strategic drivers of precision medicine.” The first part is perhaps not that surprising, but what’s been missing is how tightly related population health, value-based care and patient experience are to each other, and they are all going to be accelerated with precision medicine. Precision medicine has the ability to become the medical science of how to do better care at lower cost and create a better experience for each individual. It has the potential to become the science of value-based care. The more we customize treatments, the better we can manage populations, it’s not unlike the idea of mass customization in retail.
5. Volume to value is becoming ingrained in the health system. By this time, just about every pharma company either has or is thinking about putting together a patient engagement strategy. Part of this is driven by the success of Direct to Consumer Advertising and a desire to extend it, but the other part is that patients are a wealth of valuable information that can now be accessed for research and insight into disease and patients’ experience with their disease.. There’s a lot to learn at every step of the pharma value chain . Payers and providers are a bit slower to change, but, with value-based payments forcing movement, it’s coming.
6. Self care is what people want. Finally, as discussed in the beginning. Nobody wants to be a patient. We want independence. The horrible experiences and the overall lack of access, all driven by the insane economics of health care, are driving people away from the current health system and towards personal choice and self care with new tools and new communities. People want to be well far more than they care how they get there. There will always be a role for the professionals, be we have to offload as much as possible. The core unit of value in healthcare is the right decision. It doesn’t matter how the decision is made as long as it is correct.
7. It’s the right thing to do. Patient engagement and personal empowerment with information means better outcomes. People actively engaged do better. It’s simple, but powerful. When people have data they feel better, errors can be found, and outcomes improve. Self care is the natural end game.
Independence in care is a huge improvement to care. It’s not a cure, it’s not a fix all, but ask any patient what they hate the most about the health system, and they’ll often mention a loss of control. When we can feel like we are in control of our illness and recovery without a forced dependency for many simple conditions, it’s a big part of the battle.
Quick plug on self care: Interested in exploring self care further? There will be a panel hosted by Dell Medical School and a workshop I’ll be hosting with Self Care Catalysts (where I’m a Senior Advisor). Please vote early and often!