One Patient, One Record Symposium – Opening Remarks

Opening speaker is Kevin Leonard, Dept of Health Policy, Management and Evaluation, Faculty of Medicine, University of Toronto and Founder, Patient Destiny.  Through Patient Destiny (, Dr. Leonard is working to expand the voice of the consumer in healthcare – the patient.  Kevin believes that the 1st step is to develop an effective eHealth system where patients have access to advance health informatics tools.

I have known Kevin for about five years and have been impressed by both his passion and his determination to effect change.  I share his view that patients need to be more engaged in their care and that information technology is a key ingredient to this engagement.

Highlights from Kevin’s opening presentation includes:

  • Through his direct experience with the healthcare system, Kevin has experienced first hand the difficulty in getting access to his personal health information.
  • Doesn’t feel that we have made nearly the progress that we should in deploying eHealth solutions.
  • eHealth – only way that patients can get access to their personal health information in any meaningful way.
  • Patient Destiny – three main objectives
    • Raise awareness of the power eHealth
    • Start pilot projects that get patients engaged in their own health through access to health information
    • Performing benefits evaluation
  • Shares his battle with Crohn’s disease as a case study of how the health system works today and could be improved through use of information technology.
  • Diagnosed with Crohn’s disease, Kevin has twenty healthcare providers and therefore many records
  • Patients today are capable of lowering demand on the healthcare system by helping them to manage their care
  • 70% to 80% of healthcare costs related to treating chronically patients
  • 30% to 40% has at least one chronic disease
  • Even small improvement in treating chronically ill patients can drive significant cost savings
  • Need more evidence re: impact of patients having access to their personal health information
  • Interoperability is key to realizing full benefits of eHealth – need to be able to create a comprehensive patient record with information from disparate systems
  • No one cares more about health outcomes than the patient!  Need to better engage this group.
  • Patients need to be represented by a formal organization and this organization must be invited to the table to dialog with the other organized stakeholders.


One response to “One Patient, One Record Symposium – Opening Remarks

  1. Frank Rezny

    I expect that engagement and uptake of any kind of One Patient One Record will require a fairly large commitment on the part of individual patients.
    Young, relatively healthy patients are not easily brought to the table for such discussion, much less implementation of personal health records. In large measure, getting these people motivated to participate in their medical documentation is as difficult as getting 20 year olds to commit to RRSPs and other aspects of retirement planning.
    The patient cohort most likely to be engaged are those who are living with chronic disease.
    Additional challenges revolve around the secure transmission of data and it’s consolidation for shared care purposes.
    Individuals need to be better educated as to how they can protect the consolidated health information and they will need to choose a storage location for the data and a method in which they can invite others to provide shared care.
    I would rather not see this data stored in the clutches of provincial or federal government health ministries. Government is too often in cahoots with big business and I expect that the sharing of information will be used as leverage in the future. Look no further than provincial governments placing limits on personal injury claims for motor vehicle accidents in an effort to “control” costs and premiums for insurance. At some point, I expect that if the government has this wealth of information, it will be “shared” with the private sector in ways we can not immediately foresee.
    I do not trust Microsoft or Google with this sort of information repository. Their record on protection of data is suspect at best. I would point to the total failures at Hotmail as evidence that large software houses like these can not be entrusted with such sensitive information.
    Who should be the guardian? Ultimately, the patient.
    Who can the patient trust? Likely, the physician and by extension, the other physicians to whom he/she is referred.
    There is something to be said for paper and a little satchel the patient can carry to each appointment. It is relatively easy to secure but the risk is still there that it could be left on a bus.
    Can the patient host it on his own machine and provide secure access to it? Yes.. if he or she have the skills and are ready to open that bag of snakes.
    At present, knowing the terms and conditions for the CMA’s portal, I would trust that site to host my PHR as an extension to my trust of my own doctor.
    Other sites and/or services may gain my trust in the future but I will be very careful to read the terms of use and conditions in any case. That McGill project will have to tighten up their terms before I would consider that site.

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