Dossia: Four Years And Counting

Within the past week, I was asked to take on a more active executive role in Dossia, the combination of the for-profit service corporation and the not-for-profit foundation which has a mission of deploying and managing a patient-controlled, private, portable, personal health record system. Dossia has been in place for four years, and I began serving as the Chairman of the Board in February, 2007.

In early 2009, the Obama Administration included significant funding in the ARRA stimulus legislation for the upgrading of medical records in physician offices, and directed the U.S. Department of Health and Human Services and the Federal Trade Commission to issue regulations, which would implement a transition process over a multi-year period. Those regulations are largely in place and the legislation and regulations have enabled Dossia and the other players in the market, including Microsoft and Google, to get anchored in a relatively stable, coherent regulatory environment.

When many members of the public do not understand is the difference between electronic medical records, which a physician or hospital might maintain on their patients or a pharmacy, or insurance company might maintain on its customers, and a personal health record, which the patient or customer maintains on his or her own. Even the Executive Branch of the federal government and members of Congress did not understand the difference when we started four years ago.

Many people ask us: why should a patient maintain a record separate from the records held by these other parties? After all, could not the patient simply be given online access to these other records when he or she needs that access? There are three big reasons why the Dossia founders, of which there are now ten companies, including Pitney Bowes, my old company, have invested in a separate personal health record business (although the founder employers’ only role is to give Dossia access to their employment base for marketing and enrollment purposes. The employers never have access to any individual or population health records.):

• The majority of Americans access more than one doctor, one pharmacy, one hospital, and one health plan. Having your records scattered all over the place is not a good way of managing your own or your family’s health. None of us who have to file an income tax return or manage our personal or household budgets would feel comfortable if we had to access relevant financial information in several record systems we did not control and could not consolidate. Dossia is like Quicken in its goal of consolidating records from multiple and disconnected systems.
• To manage your health, getting records put together in one place is essential. Bad health outcomes sometimes happen because individuals forget to tell a doctor or dentist that they have been taking a particular medication, or that they have a particular health history. For example, something as simple as whether a person is taking a blood thinner medication for a cardio-vascular condition becomes very relevant for even the most routine surgical procedures. Recently, I scheduled a minor surgical procedure to get a mole removed from my back, and was asked if I were taking a blood thinner. Like most males over 45 years old, I am taking an aspirin tablet, which I was directed to stop taking a few days before and after the surgery, but, if I had been taking Plavix, Cumidin, or one of the more potent blood thinners (which, fortunately, I am not), the consequences of my physician not knowing about these medications could have been serious.
• Sometimes records get damaged, lost, or destroyed. When we formed Dossia in late 2006, one of the first parts of the country that indicated an eventual interest in a portable patient-controlled record was New Orleans, since many paper and some electronic records were destroyed. Many residents moved to Houston, Baton Rouge, and other cities but lost permanently any health records that had been in physicians’ offices, hospitals, or pharmacies in New Orleans. Sometimes, hospitals have a policy of destroying certain records, like imaging tests, after many years of inactivity relative to a patient, simply because the electronic storage of that test is cumbersome and expensive.

Microsoft and Google are better known than Dossia in the personal health record space, but Dossia is different in four key respects:

• Dossia, as the agent for all of its users, secures all of the user population records and gets them downloaded from insurance plans, pharmacies, and providers. This is called “pre-populating a record.” Microsoft and Google depend on the user going to each separate data source and directing it to download health records to their “vaults.” You can imagine how time-consuming and difficult it is to do that, and, as a result, despite their stronger name recognition, the Microsoft and Google vaults are not used actively by many who have signed up for them.
• Dossia’s model is to integrate with other employer-based health programs and benefits, including wellness and prevention programs, chronic disease programs, and health benefits and services. Microsoft and Google have an excellent array of personal health applications, but they are stand-alone and they depend on the user’s ability to figure out how to integrate them in an overall health plan.
• Dossia has done the legal and conceptual work to allow it to have a single caregiver for a family to open up and manage the records for all the family members. To our knowledge, no one else has this capability. The health care system is based on a model that each individual manages and controls his or her own health information, and, while I believe that works for most adults, there have always been three populations, children, the elderly, and people with certain kinds of disabilities, that need caregivers who have access to their health information. One of the best uses of Dossia at our existing customers is the ability of mothers to manage the scheduling of immunizations and school physicals for their children. Keeping track of who needs what shot at what time is challenging for busy parents. Dossia helps solve that problem. Microsoft and Google, like every other electronic health record, expect every individual to access his or her individual health record.
• Dossia has integrated medical and dental records, and, over time, will integrate records from a wide range of non-traditional health-related providers such as alternative and complementary medicine providers, nutritionists, fitness trainers, and behavioral health counselors. The mistake lawmakers and public commentators make relative to health records is that they believe people have, or should have, a single primary care physician. The term “medical home” implies that there is a goal of having every patient get funneled to the same doctor for all purposes all of the time. This is not the real world. People change practitioners. People are mobile and get care whenever and wherever they need it, often far away from home. People seek care from alternative practitioners. More and more people will access care from outside the United States, as they have been doing for a long time. We had an emergency hospitalization for one of our children six years ago in Florence, Italy, when we were on vacation, and had voluminous and complex records, which we have no electronic medium in which to store. Most electronic health record systems are what we call “tethered” to a particular doctor, hospital, or health plan.

Given the compelling value proposition for Dossia, why do we not have millions of users today? There are many possible explanations, but I would suggest three primary reasons:

• Like every start-up business, it takes time to get customers comfortable with the offering. In this environment, selling to users through employers has been challenging because of the bad economic environment from 2007 on, the uncertainty around the survival of employer-based health care during the pendency of the health care reform legislative debate, and the thinning out of HR and Benefits Departments, which has made large companies much less ambitious on health-related initiatives.
• In the early years, there was a great deal of uncertainty about privacy laws and regulations, which, thankfully, recent legislative and regulatory pronouncements have largely cleared up. In our first rollout with a major company, 90% of the people who wanted to sign up were scared away by ominous-sounding privacy disclosures and consents, which were put in place to cover a wide range of possible legal risks, which turned out to be unfounded. From this point forward, we expect much easier sledding.
• The expected primary source of health-related information was the claims data from health insurance plan administrators. This has been harder to secure because insurance companies are not organized to download member data in bulk to health record systems. They are organized to feed that data to print-based systems to mail individual transaction data, through what is called an “explanation of benefits” statement, to an individual member. They have attempted to direct members to the insurance plan’s own patient-specific portals, but, by their nature, these portals are incomplete representations of a person’s health history.

I am more optimistic than ever about the future of Dossia for three reasons:

• We have solved many of the technical, legal, operational, and communications problems that we confronted in our early days. We have some very demanding customers, and have secured their trust.
• We have a more compelling set of applications than ever before, and we are continuing to develop partnerships with prestigious organizations like the Mayo Clinic, Healthways, and Vanguard Health, in addition to applications like the Healthcare Bluebook, which helps consumers select and price physician and other health-related services. The usefulness of the record is increasingly good and will only improve.
• We have an increasingly large body of knowledge about the value proposition for personal health record systems like Dossia, and are reinforcing the value through continuous research.

More will follow as Dossia enters a most exciting time. I am pleased to have the opportunity to be of service to our employer customers and those who use Dossia.