Readers of this blog and my other online commentary know that I am passionate about developing ways for technology to allow patient’s to control their access and utilization of health care services.  In the past I have written about the need for Health Data Rights.

Recently, I learned about an upcoming meeting to be held on Tuesday, October 20th, 2009 by the Health IT Policy Committee at the Office of the National Coordinator for Health Information Technology.  This meeting will deal with CLIA  (Clinical Laboratory Improvement Amendments) laws and access by patients to their own test results. It may be surprising to know that patients face federal barriers access their own lab test results.

At this meeting, Dr. Phil Marshall of WebMD will testify and present a letter that provides background on this issue and recommends ways in which current legislation can be changed to allow greater access while maintaining patient confidentiality  The letter has been reviewed and vetted by some of the top health data experts and health privacy lawyers and can be found here:http://www.healthdatarights.org/pdfs/CLIA-Letter.pdf

WHAT DOES THE LETTER SAY?

THE ISSUE AT HAND: Current federal regulations under the HIPAA Privacy Rule treat test results as a special case, separate from other protected health information. CMS has issued regulations that further state that results can only be delivered to “Authorized Persons”, which as it is currently defined does not include the patient who is the subject of the test.

THE PROPOSED CHANGE: The letter proposes that the special treatment of test result data be eliminated, and that this information be treated under HIPAA just like other protected health information. It also proposes that Authorized Persons explicitly include the patient (upon request by the patient)

THE POTENTIAL BENEFITS:

1. While these changes do not address the state laws in a small number of states that further restrict access to test results, they remove substantial federal barriers to data access.
   
2. The changes proposed are unlikely to cause any harm because, under HIPAA, providers and labs generally would have up to 30 days to respond to the patient’s request, providing them great flexibility in how and when they deliver the test results.
   
3. Currently many clinically significant test results (approximately 7%) are never reported to the patient, increased access can help ensure that test results aren’t  lost to the ether .
   
4. Because approximately 14% of labs and other tests are repeated because prior results aren’t available, making test results more available to consumers can help reduce this duplication and related costs.
   
5. The changes could facilitate the use of health management applications and services that could make use of test results and have the potential to help consumers better manage their health, make more informed health decisions, and help lower costs.

HOW CAN YOU HELP?

Read the letter and inform those in your social network about this important meeting.

Comment below and suggest additional actions that you feel might be appropriate for HealthDataRights.org to undertake.

As noted above, the letter can be found here [http://www.healthdatarights.org/pdfs/CLIA-Letter.pdf]

Initial signers:

Dr. Phil Marshall, WebMD

Dr. Daniel Sands, Harvard Medical School

Jamie Heywood, PatientsLikeMe

Dr. David Kibbe, The Kibbe Group, LLC

Nate McLemore, Microsoft

Adam Bosworth, Keas

Dave deBronkart, E-patients

Dr. Roni Zeiger, Google

Colin Evans, Dossia

…..

Chukwuma I. Onyeije, M.D., North Georgia Consulting Services and Atlanta Perinatal Associates.

…….and YOU

[email action@healthdatarights.org ] to join.

PS: Please retweet and forward this link to your friends and don’t forget to endorse healthdatarights at http://www.healthdatarights.org/

Posted via web from onyeije’s posterous

Tags: Patient focused medicine