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HIMSS: Sudden Disability Could Cause Your Financial Ruin

Marty Prahl is the lead contracted health IT architect at the Social Security Administration (SSA). His personal experiences have led him to become a passionate advocate for digital data sharing. Several years ago one of his uninsured relatives was diagnosed with a devastating disease. She applied for disability benefits through the SSA but the process took over a year for her approval. During that year her medical condition caused her to lose her job, and she had no means by which to pay her soaring medical bills. The bank repossessed her home, her husband left her, and she had to move in with Marty’s family. As they waited for her disability benefits to be approved, Marty tried to make payment on her bills, which put enormous financial stress on his family.

Living through this nightmare galvanized Marty into action – he decided to devote his IT career to speeding up and streamlining the disability determination process. Thanks to Marty’s work, and the many people who created the Nationwide Health Information Network (NHIN), the SSA is now participating in an electronic medical record and data sharing network. This means that transfer of the records required to make an individual disability determination (if everyone sending data to the SSA is part of NHIN) can occur in under a minute. If the information supports the disability claim, an approval could be made within 1-2 days.

Prior to becoming part of the NHIN network, the SSA had no choice but to receive information by fax and paper. In order to make a disability determination, all medical records (from all healthcare professionals involved in the patient’s are) had to be gathered and analyzed by hand. If a doctor’s office didn’t send in the patient’s medical record in a timely manner, then the process would halt. Of course, compensation for sending records to the SSA didn’t generally cover the cost of doing so for the doctor, so the financial incentive to get the documents in was low. It’s no surprise that this resulted in wait times of 3 months to 2 years.

But some people simply can’t afford to wait – disability determinations are the gateway to Medicare and Medicaid funding, and there are other programs available for those who don’t qualify for Medicare and Medicaid. But those programs cannot be accessed until an official disability determination is made by the SSA. There are approximately 3 million new disability claimants annually in the United States – and without electronic data sharing, those people will have to wait for the paper process to run its course.

However, early adopters like MedVirginia, in Richmond, VA are already members of NHIN and can easily share medical records with the SSA. If more hospital systems and providers joined the network, disabled patients would gain rapid access to much needed government insurance benefits, and hospitals would no longer be offering them potentially bankruptcy-inducing “charity care” while they wait for a determination from SSA.

So what should Americans do about this? Spread the word about NHIN, and ask your hospitals to join the network. The software is free and available online (the CONNECT “open-source” code is here). As for me, I guess I hope that if I’m ever in a terrible car accident I’ll be taken to a NHIN participating hospital. A couple of days seems like a much better wait time than 2 years for disability benefits. I think Marty would agree.

HIMSS: Government Gives Away Free Software To Support Medical Records Sharing

Tim Cromwell’s mother-in-law is 86 years old. Her husband is a Korean War veteran who developed Alzheimer’s disease, and receives care from both the VA and private healthcare providers. Because she and her husband take so many medications, they actually replaced their dining room table centerpiece with a collection of orange and white pill bottles. Mrs. Spencer keeps a hard copy of all of her husband’s medical records in a large file box that she carries with her on a cart with wheels. She has no alternative for keeping all her husband’s providers up to date with his complex care, and lifting and transporting the records has become more difficult for her in her eighth decade.

If this story sounds all too familiar, then you’ll be glad to know that the government is facilitating electronic medical and pharmacy records portability. One day it may be possible for Americans to dispose of those hard copy files, knowing that any provider anywhere can access their records as requested.

Tim Cromwell is passionate about alleviating his mother-in-law’s need to carry medical records around, and believes the way to do this is through the  US Department of Veterans Affairs’ participation in the Nationwide Health Information Network (NHIN). Working in compliance with NHIN standards, the Federal Health Architecture group recently oversaw the creation of software  (called CONNECT) that creates a seamless, secure and private interface with hospitals, and over 20 federal agencies’ medical records systems (including the Social Security Administration, Department of Defense, Veterans Affairs, the Centers for Disease Control and Prevention, and the National Cancer Institute).

On April 6, 2009, NHIN released the CONNECT software necessary to make Electronic Medical Records systems interoperable. The software is “open-source” and free to all who’d like to incorporate it into their EMRs. Those who add the free software will be able to share data with NHIN’s member groups, which include early adopters like the Cleveland Clinic, Kaiser Permanente, Beth Israel Deaconness Medcial Center, and MedVirginia.

This means that if Mrs. Spencer and her husband receive their care from participating hospitals and federal programs, they’ll never have to tote paper records again. But it may take some nudging from patients and healthcare professionals like you to grow the network. If you’d like your hospital to participate in the NHIN network, encourage them to view the NHIN website here.

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