Recently, I re-read Michael Lewis’ great book Moneyball, which, on the surface, is a book about baseball, and, particularly about Billy Beane, the General Manager of the Oakland Athletics.

Lewis, who wrote books such as Liar’s Poker, Panic, and The Big Short, is clearly intrigued by fields of endeavor in which individuals succeed because they recognize the value of data when others are operating more by the seat of their pants.  Lewis described a baseball talent evaluation marketplace in which Billy Beane, who was obsessively driven by performance statistics, battled baseball scouts, managers, and coaches who tended to evaluate players based either on their visible physical and athletic skills or the performances these individuals observed.  As a result, when Beane overruled his organization and made decisions based on his statistical analyses, he tended to acquire undervalued talent and get a premium price when he disposed of overvalued talent.

Moneyball was a great book for many reasons, including its insights about how people trained and developed in a system in which a particular world view predominates have difficulty adapting to a different world view, even in the face of compelling facts.

However, what I picked up this time was how a handful of dedicated baseball fans, many of whom were engineers, rose up against the power structure of Major League Baseball in the 1980’s to gather statistical data that so-called “experts” had never collected.  For example, Lewis described Project Scoresheet, an informal baseball fan-based data collection system managed by a writer named Bill James, who wrote a series of books called Bill James’ Baseball Abstracts.

For example, James and the Project Scoresheet fans understood that, while it is clearly relevant in evaluating hitters to collect data enabling fans and teams to calculate batting average, determining where each hit was placed was valuable supplementary data, because it enabled talent evaluators to determine whether a player’s pattern of hitting would work across a wide variety of Major League Baseball fields, given their non-uniform dimensions.

However, what Lewis reported is that not only did Major League Baseball not capture some extremely relevant performance data, it was uncooperative in sharing the information it collected.  Lewis commented that it seemed absurd that, for an event for which individuals paid varying amounts of money to watch, they could not access the data that described that event.

There is a parallel to the health care industry.  Government agencies and others who pay for the health care we receive, whether it is a large employer or a large insurance company, get a great deal of data about our health care transactions.  The hospitals, clinics, and, sometimes, the medical practices we patronize, also collect a lot of data as well. What they share with us, however, is delayed, incomplete, sometimes inaccurate, and not provided to us in a user-friendly form.

I chair a personal, patient-controlled, portable, private, secure health record company called Dossia, based in Cambridge, MA.  When this initiative was started four years ago, the founders, one of which was Pitney Bowes, could not have imagined how difficult it would be to get some health care providers and insurance companies to give our participants, the employees who participate in employer health plans, the health data that had been collected as a result of their health care system encounters. Insurance companies report individual transactional data to patients with the same kind of obscure coding that health care providers and some government administrators use for their multiple purposes, not of which are centered around the needs of patients.

Moreover, this data is shared with us in paper form when we receive an Explanation of Benefis, or the EOB.  This EOB is not particularly helpful to someone who is not a health care professional in terms of explaining to us what happened when we visited the doctor.  While many insurance companies and some integrated health plans and payers like Kaiser-Permanente have made their electronic health records accessible to patients, these records are only usable when a patient is part of that health care system or health plan.  Moreover, the data that originates from health care encounters outside the system does not get captured.

For example, since Kaiser-Permanente is in seven states, if you were a Kaiser member who needed to consult a physician in New York or Connecticut when traveling there, you would have to consult with a physician unconnected to the Kaiser system.  It is not automatic that the transaction record will become part of the Kaiser record.

Similarly, if you moved from California, in which Kaiser is licensed to do business, to a state in which it is not, your record would not follow you.  The onus would be on you rather than Kaiser to get a copy of that record.

The same issue exists with respect to insurance plans.  Insurers and third-party administrators all have electronic health records usable when you are in their health plan or when you make a claim they process from an out-of-network encounter. However, they do not capture pharmacy, behavioral health, or other health data from a system they do not administer if an employer carves out a piece of its benefits program to be administered by a different benefits manager.

At Pitney Bowes, multiple insurance companies share the benefits management for the medical claims, but the company has a separate pharmacy benefits manager, and behavioral health services provider.  None of the insurance companies would include the pharmacy and behavioral health events in their electronic health records.

That is why ten companies, including Pitney Bowes, started Dossia and continue to build its capabilities.  The record is electronic and may not even have as much clinical data capability as Kaiser’s record or those of the different insurance plans, but it has four huge advantages in terms of its capabilities:

• It can be comprehensive, pulling in data from all different sources, including biometric data from the patient’s daily activities;
• It is portable, meaning that it will not stay with the plan or clinical care provider that owns it.  This is a patient-controlled record.
• It is designed to be easy for patients to use.  Clinical electronic health records, as well as insurance-centric records, were designed for the benefit of clinicians and to help insurance companies and health care providers manage relationships with payers, not for ease of use by patients.  I do not blame them for this; the systems were created for different purposes and are hard to retrofit for patient use.
• It is designed to be usable by the caregiver for a family.  Clinical and insurance records treat every patient or plan member as if he or she were unconnected to any other patient or plan member. Dossia is designed to help the caregiver, usually a mother, sign on to the record, and get immediate access to all of the family’s health information, not just her own.

This is why I am passionate about doing what the baseball Project Scoresheet people did, with the help of Bill James, with respect to baseball records in the health records space.  Patients need to take control of their own information.  This information does not belong to the insurance companies or the health care providers.  It is a record of a part of our life, so we should own and control it, and get easy and free access to it in the way we want it, not the way the government, providers and insurance companies want to provide it to us.

The combination of cell phone cameras, the ability to upload digital images to web sites, and the broad reach of user-generated content on sites like YouTube and Facebook mean that all of us have the potential to live our entire lives out in the open, not unlike the lead character played by Jim Carrey in “The Truman Show” a few years back. Scott McNealy, the Chairman of Sun Microsystems, made the comment almost a decade ago that, with the Internet, there is no privacy and all of us need to get over it. He’s right.

What does that mean? I have always operated on the assumption that when I was CEO of Pitney Bowes, I am always playing the role of company leader even in my private life. Everything I say can be captured and broadly reported, and my conduct will reflect well or badly on the Company no matter where I am. I particularly notice this when I am going into the doughnut shop in my town at 6:30 am on a Saturday. Whatever I say to an acquaintance is public, whether I like it to be or not. Government officials in this country are in public 100% of the time, whether they want to be or not. Leaders of any large organization are in public at all times.

If something is public, it also generally has the ability to be permanently-recorded. As Senators Clinton, Obama, and McCain are discovering, whatever they have done in their lives never disappears. As a society, we need to ask ourselves whether the preoccupation with mistakes political candidates and other government officials have made years or even decades before discourages highly-qualified individuals from taking on public service. Likewise, for all of us, whatever we do or create is likely to be permanently recorded somewhere if someone had the will or ability to record it when it happened.

Our children need to understand that the silliness of whatever they posted on Facebook or some other web site will be with them at age 30, 40, 60, or even 80. How a future employer, peer, marriage partner, child, or even grandchild will understand their behaviors and what’s recorded about them is beyond control or prediction. We are moving into uncharted territory for which we are unprepared. In a blog entitled Myspace and Facebook = The New Background Check talks about new methods, via online social networks, which allow employers to screen potential candidates for hire. Further advising individuals to be aware of the information that they are posting on the internet that can then be accessed by anyone and can have negative implications on how you are perceived professionally.

All of us need the freedom to make silly or stupid mistakes at some points in our lives to learn how to make decisions as we get older. My daughter and I are big fans of the TV show Friends. In one episode, two of the male characters, Chandler and Ross, are looking back at a video taken of one of their conversations in the late 1980’s. They are dressed in the hot fashion of the times, the look popularized by the TV show Miami Vice

During the conversation, they are looking at clothes they used to wear even earlier and comment on how silly they “used to dress.” The implications of this episode are that we will have many more contemporaneous records of our silliest behaviors, and we will not be able to judge at the time how silly they will look years later.

We implicitly recognize that certain embarrassing behaviors need to be expunged from public records, such as arrests, and we are very careful to prevent non-serious criminal convictions from affecting our ability to get employment. I am deeply concerned about large portions of our society that cannot vote or hold many types of employment because they committed a non-serious crime as a young person, even if they have lived an exemplary life for a very long time since. I also am deeply concerned that, even if public records do not reflect what happened to someone as a young person, the private records will be ample and definitive for someone wanting to bypass restrictions on what is available in public records. In the online Washington Post article entitled “Every Click You Make”, sheds light on the debate concerning privacy issues on the internet, or lack thereof.

I do not have the answers to these difficult questions, but I know that we need to adjust our thinking about privacy, about how information is collected, but, most important of all, how it is used and evaluated years later. We need to teach our children enduring values, and to think about the future implications of what they are doing today. We have not yet come to terms with what Tim Russert and his colleagues correctly concluded.