From time-to-time I receive e-mail comments from non-physicians that are highly topical, relevant and well written. The issue of public consultation in the EHR/EMR is one that has received insufficient attention to date. In part, I believe because it is very complex and difficult to understand the issues and also because the subject is so vast, it is difficult to know where to begin.
This is a comment received from a patient, who is a Myasthenia Gravis sufferer:
"From what I can tell, the development of the EHR in Canada centres on the needs of the doctor's and the facilitation of information between institutions. In the U.S., the Personal Health Record, allows for some patient control of the record -- at the very least, some involvement in their health care.
As a person with a not-so-famous chronic illness (myasthenia gravis), I have had to become my own case manager and take the lead in coordinating my care between my different specialists. It has been difficult to be both the pro-active player and ill person in the last few years of my relapse. I have insisted on receiving all copies of reports and lab results and because of this, life has been much easier for me. However, I know that there are many more people unable to navigate their way through the system as I have.
As a librarian, I fully support all types of increased facilitation of information between users. The EHR is an endeavour long in waiting. My fear is that the development of the EHR system is continuing without patient consultation.
As a physician, do you believe there has been sufficient engagement of the public and of patients as we evolve and implement EHR and EMR systems in Canada? Are there opportunities that you are aware of to seek public consultation and to integrate this into the design and deployment of these systems? Should there be a public representative (wherever possible) on key committees at provincial, national and/or regional levels to provide the 'patient perspective'? Do we, as providers, take off our provider hats enough and think about how we would like the system to work for us if we need to access the system as patients?
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