Lessons from a Beloved Friend: Arm Patients with Information for their Safety and To Heal our Ailing Healthcare System
August 31, 2105
By Dr. Bettina Experton

Yesterday was a sad day. If you have ever experienced the unconditional love only animals can give, you know how hard it is to lose a beloved pet to cancer. This weekend, my family said goodbye to our trusted friend and companion.

I rescued my cat Metoo from a shelter 14 years ago. She received the best care from wonderfully skilled and compassionate veterinarians. Every step of the way, treatment options were discussed with Metoo’s quality of life driving the decisions made jointly by her family and professional caretakers. We had the opportunity to discuss and review the detailed cost of each medical treatment or diagnostic item before anything was undertaken. Metoo was indeed at the very center of her care and medical decision-making.

To help us understand her progress, we received informative record summaries after each visit to the clinic. Often away from home, traveling the world with Humetrix, and not always there to accompany Metoo, I regularly received these visit summary records as well as her laboratory or other test results by email. Throughout her life, every veterinarian she had seen had been using Electronic Medical Records (EMRs) and would, as normal practice, give me print outs of these records at each visit.

Two weeks ago, Metoo clearly let us know that there was no point in continuing to pursue treatment and that she wanted to enjoy these last few days at home, enjoying her own backyard, sharing her love with us, without any painful treatments or further trips to the veterinary hospital. And when it came time to ease her suffering, a caring veterinarian and veterinary technician made the ultimate home visit.

Metoo knew best, and reminded us that We Too should know best. We have the right to be informed, and have the final say in our healthcare decision-making.

To Andy Slavitt, Administrator of the Center for Medicare and Medicaid Services (CMS) and to Dr. Karen DeSalvo, our new Assistant Secretary of Health: can you hear the voices of 320 million Americans who should know best? We have a legal right to get our electronic health records every time we receive care, without having to ask and wait three or more days to receive them.

As of July 31, CMS has used $31.3 billion of American taxpayer money to pay physicians and hospitals to make Meaningful Use (MU) of their EMRs, with the goal of sharing their patients’ records with other providers, and especially with their patients. We must tell the professionals and hospitals who have received billions of dollars in MU incentive payments: “Turn on the Direct secure messaging function embedded in all of your HHS certified EMRs, so that we can receive our records on our computers or mobile devices to share our medical histories as we navigate this complex healthcare system of ours.” Payment reform will not succeed without the full participation of informed citizens. This is a moral, public health, and economic imperative.

Dr. DeSalvo, with the strength of your new HHS leadership position, please take action the way you did to help heal New Orleans’ healthcare system after Katrina. The October 1st Consumer HIT Summit, where you will mark the fifth anniversary of Blue Button, is a perfect venue to clearly inform:

  1. All 48 million Medicare beneficiaries that they can now download their medical history in a usable and actionable format (and not only as a useless text or pdf claim listing file) thanks to Blue Button enabled-tools, like the HHS award winning iBlueButton app, that give all Americans an easy, secure and usable way to access, store and share their medical history;
  2. All providers who received MU incentive payments that the existing HIT infrastructure you helped build and we paid for has to be used now, starting with the sending of health records to patients’ personal health record (PHR) applications which have been developed with the same standards built into certified EMRs. With Direct secure messaging turned on, it only takes the entry into their EMRs of the Direct address automatically generated by their patient PHR, to “push” summary records to patients’ smartphones. It is that simple. But most providers have not been informed of this easy way to meet MU patient engagement requirements – instead of leaving patients to download records from multiple EMR portals.

The message must be delivered today. Patient safety cannot wait a few more years for what could be better technology or new standards to be developed and implemented.

Every year, we experience too many deaths due to preventable medical errors caused by a lack of information at the point to care. We Too need to raise our voices to help stop this epidemic. As a Public Health physician, I raise my voice for an HIT cure now!

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