Pushing ONC to Act on Consumer’s Behalf

by | Sep 23, 2009

CBR002836Just about anything you hear coming out of HHS’s ONC office is with regards to digitizing the doctor’s office.  This is somewhat understandable as there is some $36B in ARRA funding just waiting for the rules on “meaningful use” (MU) to come out of CMS sometime in December. Until those rules are released, the EMR market will continue to be in stasis.

Unfortunately, this nearly myopic focus of the physician and their adoption of a “certified EHR” has completely left the consumer/citizen out of the equation. We fear that this could come back to haunt ONC as our back of the envelop calculations show that ARRA funding comes up about $80K short of reimbursing a physician for adoption of an EHR.  Another forcing function is needed to bring these doctors into the 21st century.  Citizens can be that forcing function, but to date, HHS/ONC has completely ignored them.

We will give credit to the HIT Policy Committee MU workgroup and their MU matrix which states that physicians will provide citizens a PHR by 2013.  Question is, what will that PHR be?  Just an electronic file cabinet (nothing but records) bolted to the floor (not portable)?  If that did occur it would be an unmitigated disaster, with extremely low adoption and use.

Stepping into this fray is Rep. Patrick Kennedy of Rhode Island who’s office is now creating a Bill (caution PDF of draft Bill) likely to be introduced int he near future, entitled the Personal Health Information Act, to amend the ARRA/HITECH Act by establishing clearly defined guidelines (at least clearer that what has been defined to date) for “Personal Health Record systems.”  We won’t quibble that Kennedy’s office does not use the term Personal Health Platforms, but take satisfaction in seeing the term “systems.”

This 8pg draft Bill is a quick read, but below is out outline of it with commentary.

The Bill defines a PHR System (PHRS) as one which:

  • Provides a medical history that includes all major diagnosis and procedures with updates.  This is a no-brainer.
  • Provides recent lab results if available in electronic form.  Not sure why they state that this is limited to electronic lab results only.  Don’t most doctor’s offices have scanners? Concern here is that it may become a loophole.  Also, are all lab results to be fed into PHRS?  If yes, this could create some challenges as their is a significantly wide range of views in the medical community as to what labs should be shared with their customers via a PHR.  And if those labs are provided, they are basically useless to your average consumer if they are not provided in context.
  • List medications and prescriptions, both current and historical.  Again, a no brainer on providing the lists, but what about providing the capability to request prescription refills?
  • Online secure communication with provider practices.  Many a provider is not too keen on this if there is no corresponding reimbursement model. CMS, why don’t you take the lead here, the rest of the payers will follow.
  • Automated appointment and care reminders as well as educational and self management tools.  Now appointment reminders, heck even scheduling an appointment online is pretty straight forward and it does facilitate front-office operations, but what do they mean by self management tools?  What about educational tools?  Will a simply link-out to some website suffice or are these tools to be embedded within the PHRS itself.  This could get tricky and expensive.
  • Provide privacy, security and consent tools.  While it does not mention it in the Bill, assume such will be HIPAA compliant.  Not really sure why they do not mention HIPAA in the Bill itself.  Also, consent may prove challenging, especially for parents of teenagers as the laws vary from state to state.
  • Provide CCD & related CDA documents as well as clinical and administrative messages necessary to exchange information between providers.  Please, do we really want to force CCD/CDA onto the PHRS market where CCR is perfectly adequate and by the way, generally viewed by most IT folks as a far superior standard to work with for exchanging information.  Bad move here by Rep. Kennedy and hope this will be modified as this Bill makes its way through the House.
  • Support full portability between providers.  Good to see portability supported, but should this not be portability between systems/other PHPS or PHRS in this case?
  • PHRS delivers the functionality to serve the intake process and thereby minimize use of or eliminate the ubiquitous clipboard.  Great to see this in the Bill and any physician worth his or her salt will support this capability as it again reduces front office workloads.
  • Access to the PHRS is controlled by the patient or an authorized representative of the patient.  WHOA, expect big time push-back on this one from the physician community.  The Bill asks them to support some pretty rich functionality within the PHRS and then goes and states that the physician can be completely shut out of the PHRS a the whim of the patient?  While we do support citizen control of their health records, believe this provision is a political mistake that could completely sink the whole Bill.  This may be a bridge too far for the medical community to cross.

What’s Missing?

While this Bill is a good first step, we did find a couple of areas where the Bill is lacking.

  • First off is the whole concept of Provenance. By this we mean who create a given record entry, who has seen the record, has the record been altered in any way.  Basically, an audit trail for one’s PHI within the PHRS.  Which leads to the next omission:
  • Providing the citizen the ability to annotate the notes to provide feedback to the provider/care team.  Which leads to another omission:
  • Provide journal capabilities within the PHRS that allows the citizen to record their health/health events that occur outside of the practice.
  • Another area we were surprised to not see addressed was the ability to incorporate biometric data into the PHRS.  Biometric data will become increasingly important in the years to come to support care outside the confines of the doctor’s office or hospital.  Ability to import biometric data needs to be a fundamental capability of a PHRS.
  • One other key attribute that is missing from the PHRS is the ability for the citizen to selectively tag and share data elements within their PHRS account.  For example, one may want their primary care physician to know that they had an STD in college, but not necessarily their dermatologist.


This draft Bill shows promise and may finally get ONC to start talking about the value taxpayers will receive from the HITECH Act, rather than what they have done to date, simply messaging to physicians.


  1. Tom M. Gomez

    “First off is the whole concept of Providence” John, I think you mean “Provenance”

  2. John

    Thanks Tom for the catch. Maybe my brain was making a pun of Kennedy’s home state.



  1. ICMCC News Page » Pushing ONC to Act on Consumer’s Behalf - [...] Article John Moore, Chilmark Research, 23 September 2009 SHARETHIS.addEntry({ title: "Pushing ONC to Act on Consumer’s Behalf", url: "http://articles.icmcc.org/2009/09/24/pushing-onc-to-act-on-consumer%e2%80%99s-behalf/"…
  2. NHIN: The New Health Internet? « Chilmark Research - [...] HIEs for their complete lack of acknowledging the consumer’s role and ownership of PHI.  We came back from DC…
  3. Electronic access to patient info required within 96 hours | Avoid Breach Notification - Experior helps PHI Encryption - [...] Pushing ONC to Act on Consumer’s Behalf (chilmarkresearch.com) [...]
Submit a Comment

Your email address will not be published. Required fields are marked *

Related Content

Epic UGM 2023: Some News, Some Olds, and the March of Progress Continues

Epic UGM 2023: Some News, Some Olds, and the March of Progress Continues

Green FHIR APIs,
Climb Mount Fuji,
Come see the sunlight!
*Variation on Kobayashi Issa “O, Snail”

My second UGM (Epic’s User Group Meeting) offered a great perspective on the thousands of users on Epic coming together to share, exchange, learn, and advance their practices. Gathering around 13,000 attendees, Epic’s team has done a wonderful job just like a year before, making the atmosphere friendly while highly professional. The unique charm of Wisconsin, and Madison in particular, makes it a truly outstanding conference with a myriad of learning opportunities.

read more
ChilCast May 2023 Update

ChilCast May 2023 Update

On this episode of ChilCast: Healthcare Tech Talks, the Chilmark team explores the headlines from May 2023 in the world of healthcare IT.

We’ve also released our latest report on Hospital at Home technologies, featuring a new format!

read more
Powered By MemberPress WooCommerce Plus Integration