I was at the Aspen Health Forum last week listening to a really diverse crowd talk about health care in the US and doing a bit of talking of my own. I was talking about the importance of giving us all the right to our health data online, a topic I’ve posted about with many others on healthdatarights.org and my talk fit right into the larger topic of how personalization can help to transform medicine which can be found if you scroll down to the “Big Idea – the body”.
The theme of the conference was a more holistic one and included a truly wonderful talk by Mehmet Oz about overall health and wellness as well sessions on play, food, and sex. People forget how much of illness is caused by stress and how important it is to find ways in your life to just enjoy the world you live in. None of us can completely avoid stress, but all of us should strive to balance our drive to succeed with the need to stop and smell the roses. Of course the conference on all this started every day at 7:45 AM and finished at 10:00 PM and this was a weekend, but the intentions were good.
If you want to know what I said there and would prefer to read than listen, here is the text of the talk I gave at the Aspen Health Forum.
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There is a lot of talk about improving health care. And there is a lot to improve.
Inadequate Evidence: We don’t know enough about what works. We should require sharing of population statistics across practices and hospitals in order to better determine what works for whom. We should reward practices and hospitals that are delivering the best most cost-effective long-term outcomes and penalize those that deliver the worst.
Overtreated: Doctors often don’t know what the evidence suggests that they should do. Often even when they do they don’t do it not because of careful clinical thought but habit. The book Overtreated makes this painfully clear. We need to reward/encourage doctors based on long-term outcomes, not pills and procedures.
Flatlined: Payment is skewed away from the people who should be the coaches for consumers, the primary care physicians, because of a model that pays for the complexity of a procedure rather than for the cost-effectiveness of it. This model has encouraged countless unnecessary spinal fusions, stents, and other expensive procedures and discouraged any form of preventive medicine, patient jawboning or oversight. We need to reward/encourage doctors based on cost-effective long-term outcomes, not on difficultly of procedure. The book Flatlined makes this point incredibly clear.
No PCP <-> Patient time: Doctors can’t jawbone their patients anyway. In the old days, primary care physicians jaw-boned their patients. But that took time and energy, neither of which they have today when they have 30% increased patient loads. So they don’t. And people who should be healthy end up with joint replacements, depression, stress, heart disease, diabetes, gestational diabetes, and increased risks of cancer. And in so doing, the life-style related diseases cost us over $3 Billion a day.
Lifestyle: And the patients need jawboning badly. A key reason that our health care costs are out of control are consumer’s life styles and ignorance and lack of skin in the game. Patients literally do not know how to be healthy, have no sense of the implicit costs of being unhealthy, and have no incentives to be healthier short of chronic pain. up to 70% of our costs are due to life-style related diseases with obesity and inactivity and poor eating choices being key ones. 23 years ago, only 7 states had an obesity rate over 15%. Today only one state is under 20% and that majority are 25% or over. We have a wave of diabetics who don’t really take care of themselves leading to amputations, blindness, renal failure, heart disease, and other terrible consequences and costs.
They need more than jawboning. They need tools.
I dream of a day when everyone has online access to their health and wellness plan – Not their sickness plan, but their health & wellness Care Plan, personalized and tailored to their specific health data, their needs, their goals and their realities.
I dream of a day when we don’t publish books about how to stay healthy, we publish personalized health & wellness Care Plans written by the best in the business, experts in their fields, but augmented by the feedback and realities of online engagement with their customers as the authors and experts determine what works for whom.
I dream of a day when we truly know which Care Plans work for whom because we have been able to measure which do.
I dream of a day when consumers talk about their health score as today, they might talk about their handicap or FICO score and work with trainers to lower it as they do their handicap
I dream of a day when their doctors are partners in these Care Plans, not people patients visit when they are sick
We can and will fuel the engine and drive the innovation and payments that will slowly but surely reverse most of these problems.
This dream requires only one thing to make it a reality. One thing that can unblock this logjam. Here is the “big idea”.
HealthDataRights.Org
A Declaration of Health Data Rights
In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:
- Have the right to our own health data
- Have the right to know the source of each health data element
- Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
- Have the right to share our health data with others as we see fit
These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.
When we endorse and support these rights, the rest will follow slowly but surely.
Those of us, all over the world, who can innovate online will deliver to humans the tools that take their data into account and help them best understand and manage their health. We will connect them with your expertise. You will be able to advise, based on their detailed data, not 100’s of patients, but 100’s of thousands. We can and will team up with you to make this happen.
IF we provide incentives for being healthy (e.g. compliant with a regime, not obese, not a smoker, routine exercise, regular preventative care) the rest will follow very quickly.
Why the Declaration of Health Data Rights
Shockingly most doctors don’t even have the patient’s data electronically. But the organizations at the source do. Labs and the pharmacies and insurers and the imaging labs do. We empower the consumers to get their health data electronically, rapidly and online. This is the fuel that will fire the engine of consumer health-care because it enables the rise of online tools to help consumers manage their health and work in a participatory manner with others best equipped to help them driven by data and expertise specific to their needs. As human beings, we all have this right. To deny it is to deny healthy living to all. We are in the business of increasing health and this is the tap that must be turned on.
What will this enable.
Revolution Deferred: Next we move the routine and the information out of the doctors hands and into the consumers through these online Care Plans, whether it is getting ready for a visit, discharge, or managing a chronic disease. The internet has profoundly revolutionized every other business moving all routine work into the consumers hands, but giving them choices, flexibility, and transparent information. Travel. Banking. Books. Movies. Eating. Only in health care is this revolution deferred. We must move health care out of the 19th century and into the 21st. Then we will harness the creative talents of tens of thousands all across the world. What’s more, it will enable us to measure what works for whom in a computable fashion. It is unacceptable that this hasn’t already happened.
Health Coaches anywhere: We allow people anywhere to provide expertise online to consumers. What sense does it make that only a cardiologist in NY state who may well be out of date and has no incentives to help someone go on a diet/exercise regime is the only one who can treat a patient in NY state? Why can’t anyone with expertise in heart disease, anywhere in the world, help that patient? They will become the online partners in these health plans.
Patient Engagement: The most important of these tools will be Care Plans. They will be the online tools consumers use to know what it means for them to be healthy and how to be healthy. People need the tools and training and support to know what to do, why they should do it, and the encouragement to do it. This is called patient engagement. This is called participatory medicine. Once people have online control over their health data, their medicines and their labs and their images, a myriad of online Care Plans will emerge to help them understand how to be healthy
Incentives: Lastly, we provide some incentives, even small ones, in the form of lower health care costs, to individuals who are managing their health well as measured/defined by these computable protocols. To anyone who has tried it, a reward of a few $100 / year has a dramatic effect on compliance. Let’s say that 70MM people aren’t managing their health well or the health of their children. At $300 / year in incentives (e.g. decreased premiums) that’s $21 Billion a year or less than 1% of our health care costs IF they in fact become as healthy as they can in which case they save far more than that. We spend that on avoidable life-style related health-care each week right now. The return on that investment would be almost 100:1. It’s effect will be vastly greater than putting the current behemoth EMR’s into doctor’s offices which will often be like giving giant combines to the suburbanite who wants to mow the lawn. Giving physicians the wrong tool and the wrong incentives will still lead to the wrong result. Giving the consumers the right incentives will drive consumerism throughout the healthcare system and drive the right results, by definition.
All this stems from an incredibly simple idea.
Give consumers the right to a copy of their own health data, without impediment or delay, online in the place of their choice.
We will see the rise of online Health Plans targeted at helping consumers to understand their health and to learn how to be healthy or stay healthy.
We will see the rise of money flowing to consumers, doctors, nutritionists, fitness experts, and health coaches to support the consumers in their efforts.
We will see the system evolve from a sick care system to a health care system, driven by consumer demand.
Why will this work? Because it harnesses the power of the world’s intelligence, the world’s online delivery and the worlds innovators – you – and rewards you for doing the right thing.
It isn’t bottle-necked by how many people in medical school become PCP’s because the online tools massively leverage expertise and remove rote work from physician’s lives and transcend national borders.
It funnels the money and the talent to what works.
When we all support the declaration of Health Data Rights in deed, not in words, we will change health-care.
Join me in making Health Data Rights a reality, not a dream
Adam Bosworth's Weblog 
A good place to start looking
http://www.openehr.org/knowledge/
Quick question here – is the last item “Have the right to share our health data with others as we see fit ” – meant to apply to health information exchange, as well as personal health platforms? Meaning, “only as we see fit”? Thanks!
Quick comment – We discussed this when drafting the agreement and the agreement is just supposed to govern what you can do with your copy of your health data – It is interesting to think about your question, but it is was explicitly not intended to be covered by the draft.
Adam: I like what you say a lot, both as a consumer and provider. What I’d like to see added to the movement is the the voice, energy, and ideas of people who design and build the non-virtual environments where people live, work and play. As obvious as this seems, few architects, master planners or mixed use developers have thought about (or been invited to the table to think about) how to creatively structure or retrofit the mixed use built environments where healthy communities for life can be fostered and maintained. This is critical: People are intrinsically social beings, and much of what you propose speaks directly to enhanced interaction and decreased isolation on a larger level. Let’s break down those silos, including the concrete ones!
Hi Adam:
First, let me say that I really admire what you’re doing here, and it’s getting me excited.
But, there is a comment you made in your text of the Aspen speech that lept out at me:
“We should reward practices and hospitals that are delivering the best most cost-effective long-term outcomes and penalize those that deliver the worst.”
Penalizing under-performing institutions is a concept pushed hard by the recent Republican administration in the area of education, where under-performing schools would NOT get the same federal funds they need to improve…yet those schools don’t go away because they are often the only option for the areas they serve. Giving more resources to institutions that perform well but have been doing well without those extra resources, while denying under-performing instituions the very resources they need to improve simply exacerbates the problem. Instead, there needs to be policies and assistance put in place to replicate the best practices used at the more successful institution at those under-performing institutions, inc the $$ assistance needed for that. Just as you mention in your blog about how what the Republican resistance to system change is making you personally angry, I feel a bit like that on this concept of penalizing under-performing schools (and other necessary institutions) due to the negative affect that has had on the opportunities for some of my relatives’ kids. And, that anger also fueled by the horror stories I hear from my PhD nurse wife who deals with under-served hospitals across WA state who desperately need help, not penalties. So, I urge you to consider ways in your healthcare plans that fix the severe problems we’re experiencing to enable the critically needed Rural Critical Access Hospitals, Public Hospital Districts, and associated public and private clinics and physicians to improve without whacking them into a position where they fail to do so.
Anyway, I’m rootin’ for ya…keep up this great work!!
ps: I still remember the great talk you did on that PNW MIT Enterprise Forum SOA panel while you were at BEA…defintely one of the better speakers there!
Good point. I was too flip. We should try to fix those institutions which are under-performing. But since real people are at risk of getting treated badly, we also need to tie universal insurance to the concept that those who pay steer people away from bad treatment, no?
Yep, that’s more like it. Certainly, I see merit in helping people understand where they’ll get the best for their time & money…that concept supports capitalism via healthy competition of choice. Speaking of competitive choice, it’s not looking good at the moment in the Senate re cranking up competition among insurance companies…beginning to look like consumers will continue to not have a choice of insurance providers in most instances. Of course, it’s no over ’till…
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