Implementing an EMR might move providers closer to patient and family-centred care, but it would certainly help patients/families overcome resistance to PFCC. A PFCC-aligned EMR would be accessible to the patient. (How could it not be?! We own our medical history!) With the same access to information as any caregiver, patients/families can choose the role they play in their own care. If you want the old "You're the doctor" approach, you can have it. If you want all your test results - explained in plain language (see this Wired magazine article for a suggestion on how this can be done) - you can have them. (Without needing to lug around a "medical binder".)
Anonymous, you speak clearly and passionately on your daughter's behalf. Your points are respectful. You don't lay blame. I can rant endlessly about the benefits of EMR, in person and on this blog, but I won't have nearly the impact that you can have. Oddly, even though power in healthcare usually rests with providers, in this case, it's the opposite. You, Anonymous, have the power to advocate for EMR. You can make the point that patient care will improve. You can tell your family's story about how your daughter's care is impeded by the lack of EMR.
Talk to the decision-makers who can make EMR happen in Saskatchewan. Tell your story to your MLA. Write to the Minister of Health and the Premier. Ask to have 5 minutes at the start of your regional health authority's board meeting to explain what an impact the lack of an EMR is having on your daughter's care. The comment you wrote is already a powerful letter-to-the-editor for your local paper. Speak to your daughter's patient support group about how EMR could make all of their lives easier.
EMR = PFCC. Spread the word, Anonymous.
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I relate only to well to Anonymous’ struggle as a mother to keep information current for her daughter. Several years ago my husband, in the beginning of his kidney disease went to his specialist to be told “ all looks good, creatinine is the same’ but I (wife/nurse ) had in my possession the latest blood work – with the creatinine climbing ! When the specialist saw the most recent blood work from my purse, he sent my husband directly to the hospital for admission.
ReplyDeleteSince then I have undertaken to have recent copies of blood work, tests and reports ready for all the doctors and nurses we have met through a complicated history of failed transplant and dialysis. I coordinate pre-transplant work up, immunizations, dialysis tests, across two regions. I have avoided duplicate tests and ensured an accurate follow-up is being done. In a similar experience to you, a chiropractor was unable to access his x-ray reports through the electronic system, due to an electronic glitch. I wonder what happens when a client doesn’t have an advocate like me or like anonymous mother .
An EMR would simplify so many of these requests and eliminate repeat tests for someone who is followed by several areas . We have talked EMR for a long time in Saskatchewan. Isn’t it time we actually had it ? You advise anonymous mother to write to her MP etc. I have done that in my frustration with the stalled SK kidney transplant program and to be honest, the answers in lovely form letters do not reassure me in any way!
Thanks for telling your story!
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