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Goldilocks: “Markle’s Framework for Networked Personal Health Information is Just Right”

By Vince Kuraitis and David C. Kibbe, MD, MBA

Once upon a time, there was a little girl named Goldilocks. Like most Americans, Goldilocks had concerns about achieving just the right amount of data liquidity for her personal health information (PHI).

Until today Goldilocks felt between a rock and a hard place:

"I want my PHI to be appropriately liquid — just the right viscosity. My PHI should be viscous enough to flow to my trusted health care providers to use to improve my health and health care.

“Today my PHI is frozen and inaccessible — it’s too cold.

“But I’m worried about the other extreme — the risks of using a personal health record (PHR). The privacy/security advocates tell me that I should be concerned about my PHI being too hot — like steam that’s vaporized and disperses uncontrollably into the atmosphere.

“How do I get it just right? …not too cold, not too hot?"

What happened today to resolve Goldilocks dilemma? The Markle Foundation’ released its Common Framework for Personal Health Information (PHI).

Dossia, Google, Intuit, Microsoft, and WebMD today joined prominent health care providers, health insurers, and consumer and privacy groups in endorsing a set of practices for new internet services that help consumers track and improve their health. The framework defines a set of practices that can help protect personal information and enhance consumer participation in online personal health records.

The Markle Foundation’s accomplishments in advancing this collaborative framework are nothing short of miraculous!

Let’s revisit Goldilocks and the bears to see exactly how the Framework resolves the PHI too hot/too cold dilemma.

Too Cold! — Today PHI is Frozen.

Goldilocks went for a walk in the forest. Pretty soon, she came upon a house. She knocked and, when no one answered, she walked right in.

At the table in the kitchen, there were three bowls of porridge. Goldilocks was hungry. She tasted the porridge from the first bowl labeled "Your PHI Today".

"It’s too cold! Today my PHI is frozen — My PHI is 1) scattered everywhere, and 2) not in standardized formats suitable for a global information economy.

"It’s scattered, unreachable, frozen. Information about my health and health care is scattered everywhere. Most of it is on paper, while some might be electronically stored. "This information exists in the records of doctors, hospitals, pharmacies, labs, imaging centers, therapy centers, counselors, etc. Some of it is still in my head.

"Not only is my PHI scattered, but standards for defining and sharing the data are still evolving; where standards exist, many of them predate the Internet. Standards about how to define consistently the information (clinical standards) and to transmit and exchange the information (technical standards) are not yet formalized and agreed upon ."

Too Hot! — Concerns about PHI Vaporizing

She tasted the porridge from the second bowl labeled "Privacy/security risks around your PHI".

"It’s too hot! Privacy advocates tell me that I should be concerned about my information being too liquid — too hot, where it turns to steam and vaporizes freely.

"I don’t want my PHI to be available to people that shouldn’t have access to it or that I haven’t given permission to view it."

Just Right! — Appropriate Flow for PHI

The third bowl of porridge was labeled "Markle Foundation’s Common Framework for Personal Health Information (PHI)."

"Ahhh, this is just right! With my permission, my PHI can flow to my health care providers, and it’s protected from going places that I don’t want it to go. It’s not too cold, not too hot."

"I know that there are many advantages to having a trusted PHR. Some of the things that I (and a survey of Americans) find useful":

  • Check for errors in my medical records (87 percent).
  • Track health-related expenses (87 percent).
  • Avoid duplicated tests and procedures (86 percent).
  • Keep my doctors informed of my health status (86 percent).

"I’m comforted by many of the practices suggested in the Markle Framework":

  • Affected people would be notified if their information falls into unauthorized hands in a way that could compromise their identity or expose their health information.
  • An individual would be able to review who has had access to their personal health information.
  • Individuals would have a clear process to request corrections or dispute the way their information is handled.
  • Individuals would NOT be denied care or penalized financially based on whether they decided to provide certain medical information to an Internet-based service.

Goldilocks dilemma had been resolved:

"Consumer demand for electronic personal health records and online health services will take off when consumers trust that personal information will be protected," said Zoë Baird, president of the Markle Foundation, which organized the consensus framework. "We have broken the typical logjam in health care and reached consensus among health sectors and technology innovators, so internet health information products can flourish. [Markle Press Release; June 25, 2008]

Not too cold, not too hot — just right.

This work is licensed under a Creative Commons Attribution-Share Alike 3.0 Unported License. Feel free to republish this post with attribution.

1 Comment

  1. Online Health Information on September 9, 2009 at 6:51 am

    Great article. This is a hot topic now and you used some great analogies. This is going to be quite an undertaking, but hopefully it will pay off in the long run.

    -Zack