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“…To overcome the anxiety associated with cancer and to foster patient participation, the MIRT has a longstanding open medical record policy; ie, patients have instantaneous and unlimited access to their own medical records.”
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Little Rock’s Myeloma Institute for Research and Therapy (MIRT), at UAMS, founded and directed by Dr. Bart Barlogie as made the news with a white paper in The Journal of Participatory Medicine.
And might I add, HIPAA is properly utilized at MIRT and caregiver’s have unfettered access to doctors, nurses, labs, tests, anyone and everyone that is involved in their loved one’s care. The rest of the US and hospital administrators should be required to visit a place like UAMS and understand how mis-used HIPAA currently is. When Dave and I come home to California getting even the simplest thing done for him is like jumping through hoops of fire. Even Dave has trouble getting his lab results. The nursing staff told me they would actually lose their jobs if they talked to me. I have done much research on HIPAA and they have it all wrong. The Feds never intended for family members to be excluded or hampered in the process. I have often stated, being in California now with the Gay Right’s issue and Prop 8, that I don’t know what they think they are getting but having been married for such a long time, I can tell you I have little to no rights at all! I get laughs, but no access.
When you consider that many of us talk about how hard everything is when we embark on this cancer road, from insurance, to workplace issues, to the numb nuts we meet on the phone or in the doctor’s office, a place like MIRT takes all that nonsense away and you no longer have THAT to worry about. It’s not perfect and they have been undergoing some changes there that have hampered these efforts, but it is still heads above anywhere else on the planet, not just for MM, but for comprehensive, catastrophic healthcare.
Anyway, I’m proud of UAMS/MIRT. They absolutely turned the paradigm on it’s head when they began to administer stem cell transplants completely as an outpatient close to 20 years ago!
Congratulations to all of you on the UAMS campus!
PS This website on participatory medicine is worth exploring. It’s founder has passed away but it’s members and his friends have continued his cause. It’s impressive.
