When former "Good Morning America" anchor Joan Lunden, who is now a paid spokeswoman for PassportMD, was recently interviewed by ABC News about "the new world of online medical records, one of the first things she said was: "Ten years from now we'll laugh that we were even having this conversation, because everybody will keep their family's health records online."

The way things are going — with nearly every other aspect of our lives now intertwined with the Internet — I'm inclined to believe that she's spot on.  But as a diabetic, I still wonder about the value of these Personal Health Record (PHR) systems for people dealing with the complexity of managing a chronic illness.

The other key question is, who's currently pushing PHRs and to what end? If they're not selling advertising on the site or charging for the service, then what's the business imperative behind it?

And who better to respond to these questions than the Dossia Consortium? Dossia is an independent, nonprofit institute chartered with developing "a Web-based framework through which U.S. employees, dependents and retirees can maintain lifelong personal health records."  It was formed and has been funded over the last two years by some of the best-known brand-name companies in the world: Applied Materials, AT&T, BP America, Inc., Cardinal Health, Intel, Pitney Bowes, Sanofi-Aventis and Wal-Mart.  (Read all about Dossia's work and directives HERE)

I was fortunate enough to bump into Dossia's President and CEO Colin Evans (who's "on loan" from Intel Digital Health Group) at a few recent "Health 2.0" events.  Here are his responses to one diabetic's pressing questions:


* Can you start by reminding us: Why would we want our health records linked to our employer?  Especially when people are likely to change jobs multiple times?

"The benefit of employers leading this effort is that we have leverage over the sources of information. Individuals have a right, under HIPAA, to their information but have very little power to get it. We can make it a condition of doing business that plans, providers, pharmacies provide the date electronically. Employees are better off when the employer uses this clout.

"That said, the system we are building is completely independent of the employers — the employee assembles their information and is in complete control of who sees it. Employers cannot see any information in the system."

* But the employers are the ones financing and rolling out the system.  So how does that relationship work?

"Dossia is an independent, non-profit organization and the Dossia system operates independently of the employers. The only connection is when accounts are setup so we can use employers to provide initial authentication for their employees. After that, they are not connected and employers cannot access employee data from Dossia."

* What's the big value-add for employers in introducing Dossia then?

"Employers get empowered employees. Employees who are better engaged and better informed make better lifestyle and healthcare choices — avoid bad habits, avoid waste, pay attention to wellness, and stick to their meds. This collectively reduces cost and increases employee effectiveness.

"Employers also get healthcare leverage. That is, Dossia provides support that is not connected to any one particular health plan, hospital, or pharmacy. Employees that are taking care of themselves in a system that is independent of the healthcare actors can more easily take their business elsewhere, if they're unhappy with their healthcare providers."

* Also, Dossia claims to offer "life-long health records." How does a user practically "take their Dossia with them" if they move on to another employer?

"Several ways to do this will evolve. Users could download their data and take it to another system, their new employer could offer Dossia, or they could leave it in Dossia and use the default application to maintain their own information. We hope that network effects and general consumer expectations will make Dossia uploads the norm for most players in healthcare eventually."

* And what about smaller companies?  Will they eventually also have access to Dossia?

"Yes — our future phases will allow smaller companies to take advantage of the system and we expect distribution channels to eventually include trade associations, chambers of commerce, and employer purchasing collectives."

* We're hearing a lot about these PHR systems lately. How does Dossia differ from commercial offerings like Google Health and Microsoft HealthVault?

"The architectural approach is similar but the business model is very different. Dossia is a non-profit that is not funded by ads or online search that monetize customer data. We are trying to fix healthcare, not build a new healthcare cost-adder."

* But it sounds like similar to Google and Microsoft, Dossia aims to create the premiere technology platform that software developers will build health applications on. (You're also working with the Continua Alliance to create open standards for health records, which is great.)  So what are Dossia's immediate goals?

"Yes, we are trying to build a personally controlled health record platform and working with applications and service companies to make that a rich capability.

"The Continua relationship is all about making sure that healthcare devices can connect to Dossia using open standards. The data that people need to manage health is both institutional (labs, medical records, prescriptions) and personal (weight, exercise, blood sugar, mood, blood pressure) and more of this information can be gathered cheaply and frequently. This is clearly very appropriate and unsurprising for diabetics but we can get a lot more data into people's hands if we move from the hospital (mainframe) to home (personal computer) model.

"Dossia's immediate goals are to expand implementation and adoption with the founder companies. We are well on our way with Wal-Mart associates and will add other companies in 2009."

* As you know, there are 21 million Americans now living with diabetes.  Does Dossia currently offer any special features or tools tailored towards this disease?

"Dossia itself is the data aggregation and applications platform based on the Indivo platform developed at Boston Children's Hospital and Harvard. It does not have specific diabetes features but the data model and API support any application that would be helpful to diabetics. We expect to pick and work with a small number of companies to provide these capabilities and the Continua members will also provide connected devices for patient self-monitoring."

* Can you briefly explain your recent rollout with Wal-Mart?  How does using Dossia make healthcare more affordable for employees there?

"Dossia was offered to Wal-Mart employees who opted to get their health benefits from Wal-Mart and a large percentage of employees opted to create a PHR. I'd refer you to Wal-Mart to get more details of their experience and how they expect to evolve incentives and benefits."

* What about device connectivity? Can I download my glucose meter data to the system, for example?

"As noted, as soon as these devices come available, Dossia will allow connections."

* Typically these PHRs appear most useful for healthy people, who just need to store very basic health information. So what about chronic disease management?  Does the system accommodate people like diabetics who may see a half-dozen different doctors on a regular basis?

"The underlying platform is designed to accommodate data inputs from multiple sources and feeds to multiple applications.

"Coordination of care will improve as more and more providers connect to the system automatically. As we build critical mass it is also possible for a patient to grant access to a physician to add to their record. The Indivo platform in use at Boston Children's is seeing many examples of complex care management."

* Assuming you've had quite a bit of user feedback already, what kinds of things are people liking and not liking about the new "personally-controlled health record"?

"I'd say this is really in its early days."


Hmm, that last bit leaves me wondering if there's anything Colin's not saying.  In any case, between the aggressive efforts of this group, along with Google and Microsoft, it's pretty clear that in about a decade, we'll look back and say, "Yep, Joan Lunden was right about that!"

Disclaimer: Content created by the Diabetes Mine team. For more details click here.


This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.