One Patient, One Record (OPOR) Conference

Last week I attended the One Patient, One Record Conference in Toronto which was billed as a “one-day symposium to promote patient eHealth”. The conference was organized by Dr. Kevin Leonard, a University of Toronto professor and outspoken advocate of patient rights. Kevin believes that IT is a key ingredient for empowering patients to take a more active role in the health. Although I had hoped to live blog from the event, I was unable to find a suitable Internet connection. So, instead, I wrote blog entries during the event and will post them over the next week or so.

 I attended the conference as an individual passionately interested in Personal eHealth, not on behalf of my employer.  One of the topics that I hope explore through this blog is Personal eHealth and I felt that Kevin’s efforts deserved as much coverage as possible.  Hence, I asked Kevin for an invite and decided to attend on my own time.

Dr. Leonard suffers from a chronic disease and has experienced first-hand many frustrations in trying to treat his condition.  He opened the symposium by walking through, one by one, each of the 19 healthcare providers with whom he deals.  He noted that he had 19 distinct patient records and that it is not easy to either access or share these records.  As I have stated in several forums, Dr. Leonard made the point that we have an opportunity to improve healthcare outcomes and to reduce stress on the healthcare system by gettting patients more involved in their own care.  Just as other industries have used IT to shift some tasks their clients, so too can our healthcare system.

Consumer eHealth (what I prefer to call Personal eHealth) is a topic gaining considerable attention in both the private and public sector.  Infoway, for example, has added Personal eHealth to its agenda and appears to be working on Personal eHealth initiatives with Microsoft and Google.  As this topic gains increased profile a number of policy issues are need to be debated.  Dr. Leaonard opted to tackle these issues through open debate among conference attendees.  Scattered throughout the day was open debate on a number of questions.  These questions included: 

  • Should patients have to wait until to access their personal health information until it has been reviewed by a healthcare professional?
  • Should caregiver or the patient’s support network have the same access to the patient’s health information as the patient does (assuming permission granted by the patient or through “power of attorney”)?
  •  Should patients be able to control access to their own EHR to allow others access to certain segments of their EHR or to all of their record?
  •  Is there value in patients accessing their own health information (such as lab results / consult notes / radiology images) to enhance their ability to manage their own healthcare?
  • Will patient access to their EHR data / information improve patient safety outcomes, i.e., avoid duplicated tests, cross-effects of drug mixing, poor hospital outcomes?

 What are your thoughts regarding these questions?  Are there other key questions that need to be debated?


3 responses to “One Patient, One Record (OPOR) Conference

  1. Very interesting post. I recently attended the Medical Office Assistants of BC annual conference and had a telling conversation with a physician on this very topic.

    Personal eHealth as you like to call it a reality for a small but growing number of Canadians. One of the central issues in my mind is the concept of the gatekeeper. In general business this gatekeeper is usually the EA for the CEO or senior person you are trying to contact. In healthcare, the gatekeeper is the physician themselves.

    The doc I was speaking with at this conference is a specialist with an EMR and lots of experience with patients coming in with internet research, binders filled with paper and/or even key fob PHRs. He generally smiles and quickly explains that he is not in fact going to review their material, in paper or electronic format. The choice is simple in his mind, you want my clinical help, then its on my own terms, not yours.

    I can see how this perspective makes sense for a physician. Overworked and trying to get through dozens of patients, he/she wants to get the patient through FAST. The patient does not really have much choice, there is a doctor shortage in Canada last time anyone checked.

    From a patient perspective this attitude can be hugely patronizing and frustrating. For Personal Health to take off in this market, we really need to figure out how to either work in cooperation with the Physician or force them. Until we figure out the roles that work for everyone, Personal eHealth is going to be stuck in limbo.


  2. This perspective reminds me so much of what I witnessed in other industries as they grappled with the Internet. Stock brokers are one example. For the longest time they resisted providing any services on-line, insisted that customers had to deal through them. Then, along came Charles Schwab and the pardigm changed.

    As a patient at the OPOR conference explained (see my blog post on this topic), people are increasingly seeking out information that they need to manage their own health. Whether they bring material to their visit or simply arrive better educated. they will gather information on the Internet and use this information to faclitate a more informed discussion.

    I also recommend that people check out reserach on this topic conducted by the Pew Internet Group. This reserach clearly shows that people’s on-line encounters are impacting decisions regarding their health, particularly for people with chronic diseases.

    Simply refusing to look at information that people bring to their next visit with their doctor will not deter them from using the Internet to research information about their illness or the doctor’s recommendations. While a doctor might refuse to look at their printouts they cannot erase the information in people’s heads.


  3. Although I agree that the physician attitude is not constructive, I still feel that we need to provide a carrot or stick to get physicians to become involved. Forcing physicians (who hold a huge amount of power with these relationships) is not going to be very productive. I think we need to tie the PHR requests to some kind of patient self-management incentive that will get the doctor onside. Otherwise how do we propose to make them play ball?

    As much as we all see the power of the consumer in different markets, Canadians don’t see healthcare as a service they pay for, it is more like a right. Until/unless the patient pays the full healthcare transaction directly out of their own pocket, how will they force the system to change? This is why I have some concerns about the PHR in the Canadian market. Consumers can force brokerages, airlines and other industries to cater to their desires, but they don’t have a direct pay financial hammer to influence docs in Canada.

    I want to be clear that I am not against PHRs, I think it is a fantastic idea that is past due. I just can’t get my head around how to make the business model work in the current Canadian environment.


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