Rob's Rants

Ten years ago I was working at a large networking equipment company (not Cisco) and the big push of late 1998 and early 1999 was to help companies, or Enterprises since that term was just gaining popularity, build their intranets to “enhance employee communication.” Part way through ’99, and in between the bouts of orgasmic glee our executives had shoveling in mountains of cash fueled by the threat of the Y2K bug, someone in the organization decided that the company should put its money where its mouth was and build up our own shining example of an intranet. The VP in charge asked someone who worked for him if he knew anyone who could “write webpages” and since that guy was my friend and partner in our new web venture (Hike New Hampshire — still on the web a decade later at http://www.hike-nh.com) I eventually got the job. So in mid ’99 I was anointed with the title of Web Content Manager, and set about coming to the realization that I was doomed to fail because the position had been envisioned by management to simultaneously grow the company’s intra- and internet presence AND make sure that nothing objectionable was ever said (hence the “Manager”).

The Cluetrain Manifesto - 10 Years Old

It took about 90 days for the reality to set in that I was doomed, and for a while I felt alone. The Marketing Department refused to relinquish any control of any external pages, and other managers wanted thoroughly defined approval hierarchies for any internal content. So my title probably should have been Web Approval Queue Manager but that wouldn’t have sounded too “webby.” But then I ran across something on the web that gave me hope — posted at http://www.cluetrain.com was a manifesto — 95 theses — that truly captured everything I was thinking at the time. And there it was — a decade ago — all laid out for us. The rise of blogs and Twitter and Facebook. All wrapped into the central premise that people want to communicate in ways meaningful to them and the internet and all of it’s technologies can enable that kind of instant, global conversation. The 95 theses are important, but the initial dozen rocked my world:

Markets are conversations.

Markets consist of human beings, not demographic sectors.

Conversations among human beings sound human. They are conducted in a human voice.

Whether delivering information, opinions, perspectives, dissenting arguments or humorous asides, the human voice is typically open, natural, uncontrived.

People recognize each other as such from the sound of this voice.

The Internet is enabling conversations among human beings that were simply not possible in the era of mass media.

Hyperlinks subvert hierarchy.

In both internetworked markets and among intranetworked employees, people are speaking to each other in a powerful new way.

These networked conversations are enabling powerful new forms of social organization and knowledge exchange to emerge.

As a result, markets are getting smarter, more informed, more organized. Participation in a networked market changes people fundamentally.

People in networked markets have figured out that they get far better information and support from one another than from vendors. So much for corporate rhetoric about adding value to commoditized products.

There are no secrets. The networked market knows more than companies do about their own products. And whether the news is good or bad, they tell everyone.

Ten years and a career-change later, my dog-eared copy of the Cluetrain Manifesto (yes I bought the book — I may have read it online, but the people around me who didn’t get it needed something on paper; and this was long before laptops were ubiquitous and truly portable to enable electronic reading) still sits on my desk.

So what got me thinking about this? It was more discussion about Participatory Medicine. It occurred to me that one could substitute the word “doctor” for “executive” and “hospital” for “corporation” and “patient” for “market” and we’re really talking about the same thing. The Internet is facilitating all kinds of new conversations about health and connecting patients in ways that disrupt the traditional medical hierarchy and one-way feed of information from provider to patient. But what really concerns me is that although there has been some corporate progress (think CEO blogs and Twitter), not a lot has really changed with a lot of companies in the last 10 years.

While this doesn’t bode well for rapid progress in Participatory Medicine, perhaps people’s natural inclination for remaining deeply and passionately engaged in their healthcare, compared to their engagement level for electronic devices, might drive this process faster.

In any event … here we are ten years on and the concepts in Cluetrain remain relevant. I’m happy that I was there in the beginning and that I am finding myself in the middle of this second round.

Lawsuits ... We need Lawsuits ...

ePatient Dave made a blog post yesterday looking for ideas about a talk he is going to give on patients having unimpeded access to their medical records in a forum on Participatory Medicine. It got me thinking enough to add some comments.

For those of you not following the idea, Participatory Medicine is the concept that the relationship between a patient and their providers should be more of a collaboration on health and treatment than a one-way pipe of doctors telling patients what to do — the patient should participate in treatment options as much as the doctor does. This is probably over-simplified, but the concept is certainly new enough to scare a lot of the medical establishment. The underlying principles are that, in an information-enabled age, patients and patient-communities are often able to digest and process important information about their conditions faster than the medical establishment, and therefore, these educated medical consumers should play a co-equal role in directing their own care. The movement is best embodied in places like Dave’s blog as well as e-Patients.net. One of the planks of the platform is that patients should have access to their records at any time, in order to have all the basic information they need to make sound decisions.

Participatory medicine is an idea that I would say I am interested in, more than I am a passionate advocate for. Probably because I’ve been pretty healthy so far in my life and really don’t have a medical record to speak of that I’ve ever tried to access. But Dave’s call for questions did get me thinking.

The concepts surrounding Participatory Medicine are complex: is medical information available to the average patient reliable? Is the average patient capable of separating the quackery from the valuable? Are patient communities really good at distilling information, or do they perpetuate rumor and innuendo?

The one on my mind (and Dave’s too) is this: in a medical record, who owns the information? Clearly the information is about the patient — so the easy answer is to say that the patient “owns,” or is at least entitled to access this data. But I can’t really think of a precedent for this line of thought in society. For example, a biography may be the life story of a particular person, but upon completion, the rights to that story are given to the author, not the subject. Why is this? Because a biography is more than a collection of facts; it includes analysis and structure that are the creation — the intellectual property — of the author. I have to think that the same is true of a medical record. Sure, the record contains biometric and physiologic data from the patient but, particularly in long relationships and complex cases, it also contains diagnoses and theories and notes. Things that are the creation of the provider (and the institution). And I am therefore willing to concede that the providers creating these records should have some say in what happens to them.

The dilemma I’ve just laid out could be solved simply by defining what is and what isn’t a “medical record.” And going forward, I think this will happen. Data and facts (tests, observations, etc.) will be part of the “record” and made available to the patient while thoughts and speculation and internal conversations will become part of an internal archive that providers will keep to themselves. But the future isn’t the problem — Dave and the Participatory Medicine advocates are more concerned with the current medical record than they are with the future one. And the current record isn’t so well defined.

The question then becomes, why are providers and institutions so reluctant to open this archive to patients on demand. And the conclusion I drew was fear. Fear of many things in fact:

• Fear that patients won’t properly understand what was written and why.
• Fear that the record will reveal mistakes made in the past.
• Fear that patients will see all the details about what their insurance company was charged and ask “what is all this?”
• Fear that proprietary procedures will be revealed.

I don’t believe that malpractice lawsuits are a significant contributor to medical costs (an opinion shared by others including parts of the medical insurance industry itself and some prominent economists). But I do believe that institutions would rather avoid them. And I believe that there is a deep-rooted fear among individual providers and institutions that releasing historical health records would create an entirely new industry of “medical record trolls” combing through page after page looking for any possible error that could result in a lawsuit.

So my thought is that there needs to be some sort of protection in place before we will really see providers opening the archives. And I wonder if some sort of indemnification is warranted for the sake of opening the archives. Sort of a legal waiver guaranteeing that people won’t release the records to the Trolls. I think that if there were some sort of standard format for these agreements, we’d see institutions opening up the archives more quickly. And I think that this protection is a small price to pay for the benefit of really seeing one’s history.

I’ve been thinking about the coming healthcare payment revolution, since that’s kind of what I do for a living. In particular, the idea floating around Massachusetts to go back to a capitation-like scheme with lump sum payments to provider organizations per patient and incentives based on outcomes. I’m thinking about this in the context of the movement towards patient-centered care with which I resonate.

And I fear that the two concepts are fundamentally at odds. Worse, I fear that the concept of outcome-based payment is fundamentally at odds with my individual rights and liberties.

Under the type of system being discussed, every patient would be assigned to a medical practice and then that practice would be rewarded if the bulk of their population of patients met certain health targets, such as controlled blood pressure or controlled diabetes. There are dangers in such a system if not tightly controlled, because the system essentially shifts the financial risk/incentives onto providers instead of insurance companies and providers suddenly have a financial incentive to attract the healthiest patients and dump the sickest. While I’m sure that the system under discussion would be constructed to prevent the most egregious behaviors of this type, there is another, more subtle problem.

That is — it essentially removes my right as a patient to choose the level of care I am comfortable with without being bothered, badgered, or harangued by the state, in this case via a physician proxy. This scheme supposes that everyone has an equal desire to be the healthiest that they can possibly be; a noble idea, but not necessarily grounded in reality.

In today’s system, the patient is really in charge of seeking care. And that means that they can opt-in or out as much as they wish. And I’m sure that for a large segment of the population, there really is a knowledge or financial gap which keeps people from taking the actions necessary to prevent major health catastrophes later in life. By this I mean that there are probably people who don’t get their blood sugar checked at all and are blissfully ignorant that they walking around with Type 1 or Type 2 diabetes. And I’m sure that incenting doctors to give these patients more focus will go a long way to preventing major illness in this country.

But there is another group of people who are neither uninformed nor incapable of doing the right thing, but simply choose not to. To a certain extent in fact, I think this represents 90% of the population in some way, with vegan triatheletes excepted. Smokers certainly fall into this category. As do I with my continued consumption of bar-b-qued meats in spite of mildly elevated cholesterol. And I worry that under a new system I will lose my fundamental right to consciously decide that I’m going to eat another serving of pulled pork even though I might have a heart attack at 65 because of it. And I’d like to do this without some primary care doctor somewhere leaving 18 messages a week on my answering machine and scheduling me appointments with a dietician as if I didn’t know that 4 servings of vegetables and a bunch of whole grain is better for me than the slice of pizza I had for lunch. Believe me, with all the steak, pork, and Coke I’ve consumed in my life, when I hear someone shout “Clear,” and I open my eyes under the bright Emergency Room lights, I won’t be asking how this heart attack could possibly have happened to me.

I think this streak of stubbornness comes from my dad. Somewhere during his life he adopted the saying, “I’m going to live until I die.” Not live in the biological sense either, but live in the “live it up,” Rat Pack, I’m going to enjoy every minute of this trip on the Earth sense. And even though he wasn’t dancing at the end, I have no doubt that he lived his life the way he wanted — smoking and drinking  right up until he died at 67, which happened in less than 48 hours from start to finish since the hospital honored his DNR wishes. So my Dad opted-out of the healthcare system for most of his life and opted in only enough to relieve his major suffering at the end. I may not agree with the choices and with a lot that he did in his life, but I can admire his putting his money where his mouth was. He lived until he died and never spent other people’s money in a desire to keep a corpse alive with hundreds of thousands of dollars worth of intensive care.

I think the fact that all of this was done with private money makes a difference, because, fundamentally, Americans are pretty tolerant of other’s choices and behavior until it starts “costing them money.” And if we increase the Government role in healthcare payment then suddenly taxpayers start getting really nosy about what I am eating for dinner because it might cost them money if my poor choices give me a heart attack or colon cancer and I ask them to pay for treating it. Before you know it, Big Brother has banned smoking (already almost complete), fatty foods (trans-fat bans are already in place), and then who knows what else. Soon there will be a squad of Cholesterol Police knocking at my door to make sure I’m eating chicken sausage and not the real thing. And this scares the daylights out of me.

So this is the conflicted state in which I find myself. On one hand, I’d like someone to help me and my family understand that “partially hydrogenated” anything is fundamentally bad and vegetables are fundamentally good, but I also want it to be a suggestion. Give me the knowledge and I will make the decision. Sometimes you may think that decision is a poor one (see my rare hamburger post). But fundamentally I believe I have the right to make it. On the other hand though, I am no fan of private health insurance companies and the profits they make and the way they treat customers and cancel policies.

So I need to think about this more and figure out where I will ultimately stand, but in the end, I am sure it will be on the side that offers more choice. I have a feeling that Nudge by Cass Sunstein and Richard Thaler offers some good ideas, and I am comforted that Sunstein, a self-described Libertarian Paternalist is in the White House offering opinions on this.