Information Fundamental to Knowledge

The foundational element to knowledge, from which wisdom flows, is information.  Without information one can not begin to understand.  So why is it that we, as consumers, have such a hard time gaining access to our personal health records, our personal health information (PHI)?

Without access to that information, are we left to go forth blindly, without full awareness of the repercussions of our actions to our health? Do we put ourselves at risk if we must interact with multiple physicians who can not readily share our health records among each other? Can we adequately care for a loved one if we do not have clear, readily available information regarding their health condition(s) and the medications they may be taking?

Well folks, that is basically what we have today in the US healthcare system, a system that woefully lacks health information in a computable, digital interoperable form and even when digital records are available, they are not readily shared among physician practices and hospitals.  Many a physician has struggled to compile a complete record for one of their patients.  As for the consumer, well they are most often the last in line to gain access to their records, to their information and even when they do, that information can often be suspect.

For example, one person Chilmark Research recently spoke to told the story of how, when they asked their local hospital to allow them to move their PHI to a self-managed PHR, the hospital told them that would be a violation of HIPAA and they would not allow it.  Luckily, this individual did know HIPAA rules and ultimately prevailed, but that is a rare case as most consumers would not know how to fight the system to gain control of their records.

Another example came up last week during a conversation with John Phelan, founder of the new PHR start-up, ZweenaHealth. Their market differentiation is to act as proxy on behalf of the consumer to collect all of the consumer’s records, in any form factor (paper, digital, fax, whatever), and convert to a digital, CCR compliant record for an annual subscription fee.  John related the story of one healthcare provider who wanted to charge the consumer (via Zweena) several hundred dollars to fax a 7pg medical record to ZweenaHealth.  Apparently, the healthcare provider thought ZweenaHealth was a potential competitor and was loathed to release any information, even though the consumer/customer requested it.  Ultimately, ZweenaHealth was able to convince the provider that they were not a competitor and the PHI was released for a nominal fee.

It simply should no be this hard to gain access to one’s PHI – Period!

The healthcare system, unfortunately, is rife with such stories and we will not achieve any sense of healthcare reform if we do not get Joe the Plumber or Jane the Corporate Exec directly involved in better managing their health.  And might better health management begin with better information, leading to better knowledge and ultimately better, more healthy behaviors?

The Declaration:

Last night, a Declaration of Health Data Rights was nailed to the door of the healthcare establishment that demands, in the most simplest form, that consumers have four specific rights to PHI:

We (the people),

• Have the right to our own health data
• Have the right to know the source of each health data element in the record.
  
• Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost, If records exist in computable form, they must be made available in that form.
• Have the right to share our health data with others as we see fit.

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

Now who in the right mind could ever deny such basic principles?  Doubt if even the high council in Iran would deny such rights.  So all you payers and providers, hand over the consumers’ PHI as we no longer wish to be held hostage by you. This information, is after all about us, not you.