There's been a lot of discussion and controversy taking place in Washington over the concept of "meaningful use" of electronic medical records. The bulk of the discussion, and 100% of the original December 2009 "meaningful use" proposal from the White House, centered on doctors, hospitals and what they would need to do to qualify for federal funding to help them set up EHR systems in their offices and facilities. If they wanted that money, then they would have to prove in "meaningful" ways that their federally-paid-for EHRs were being used correctly. (For example, they had to show that X% of their prescriptions were being ordered electronically or that x% of patients were being tracked electronically.)
Yes -- like everything else in healthcare, meaningful use was all about the money. And, like too much of healthcare - we patients were nowhere to be found in those guidelines.
After those proposed regulations were first issued last December, a number of my patient empowerment colleagues stepped up to make sure our patient-voices were heard! They wanted to be sure we patients would have some say in meaningful use - a way to access our electronic records and a reasonable list of what those records would be required to include. They met with congressional representatives, they blogged, they showed up at hearings, they made phone calls and wrote letters and some, like my friend Regina Holliday (I've shared her story about her husband's death previously), painted buildings or made videos.
Yesterday, the final meaningful use regulations were announced. And yes, my patient empowerment friends were successful in making sure we patients will be able to access our EHRs and their contents. The new regulations also require that everything from test results, to a medications list, to allergies be included. Further, hospitals must include a discharge summary and procedures for at least 50 percent of patients within three business days.
For us patients, these new regulations are a good start.
So why the tears? Because at the heart of the matter is how patients' lives will be impacted by these new meaningful use rules. And once again, my friend Regina stepped up to the plate to share her heart and her story.
Here's a link to the video of Regina's address. I dare you to watch it without choking up. Regina defines the real importance of meaningful use and why it's not really about the money at all. You'll need a few tissues and a couple of moments to compose yourself afterwards.
Many many thanks to my empowered patient friends who worked so diligently on behalf of us all. You did it! And we all appreciate it.
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Photo of Regina Holliday from the Meaningful Use announcement July 14, 2010
My heart goes out to Regina for the sufferning caused by an insensitive and bureaucratic system. Access to information is critical for patients and their families who want to be in charge of their health and medical care. Unfortunately, despite HIPAA laws, doctors and hospitals make it difficult for patients to get the information. Laws only escalate the divisiveness of the system.
On several occasions when I wanted to take my care to another doctor/hospital and asked for my records/MRI etc I was given the 21 day wait excuse while foot dragging and red tape were applied. The existance of an electronic medical record or any medical record is moot if the system will not allow you to access it. The problem lies in the paternalistic culture of meidicine as much as it lies in the form a medical record takes. Until the access issue is fixed acquiring one’s medical information will be hampered. Until doctors and hospitals create systems and attitudes that view the patient as an integral part of their own medical “team” progress will be thwarted.
Until then advocates need to be prepared to be aggressive with the system and demand access to the records and if not forthcoming be prepared to engage lawyers or file HIPAA complaints. Sometimes a hostile system needs a hostile response. Sometimes it works.
I made appointment to talk to a pain mgmt doctor in order to decide if I want to use him. The receptionist asked me if I ever had a CAT scan of my left hip which was the problem. I told her I had. When she called me to verify the appointment (3 weeks after my initial calll) she spoke very rudely to me informing me I did NOT have a CAT scan and immediately recited every test I had in the local hospital for the past 9 years or so. I told her I had the test in a different hospital. I did not give her authority to get my record as I was not a patient (and decided this was not the doctor for me). I called and asked the hospital why they gave out my medical history and he said they always give the information to a doctors office. I wonder if I write to the hospital infroming tem they cannot give out information about me before I consent to it.