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?