I try hard to live my life with few regrets. There are many reasons for doing so, the most pragmatic of which is that it is virtually impossible to know what might have happened along the road not traveled. Every once in a while, though, there are events in my life that regret. One of these regrets is not finding the time to book lunch with Kevin Leonard after committing to do so when I saw him at eHealth 2013 in Ottawa.
I have known Kevin for close to 10 years. We first met at an eHealth conference in Toronto in 2005 after I attended a presentation on person health records for citizens (click here to read a review of this presentation by Hans Oh). I was intrigued by what at the time was the rather novel perspective that patients should have access to their data. When he mentioned his new book, A Prescription for Patience: A Guide to Improving Our Healthcare System, I made it a point to hang around after the presentation to buy a copy and get him to sign it for me.
Although Kevin and I did not always share the same views on matters related to eHealth, we had mutual respect for each other’s opinions. I always welcomed the opportunity to chat with Kevin and was thrilled when he asked me to guest lecture at one of his courses in the fall of 2012. It is a highlight of my eHealth career that I will always cherish.
Kevin is a wonderful example of how to effect change. He didn’t just complain about what bothered him He took action and encouraged others to do the same.
I regret that I was unable to find the time to have lunch with Kevin before he died. It is truly a missed opportunity, one that I know I would have enjoyed.
At the itHealthcare Canada conference and exhibition organized by HIMSS Ontario earlier this month, one of the keynote speakers, Dr. Kevin Leonard, questioned whether we have the appropriate leadership in Canada to aggressively drive deployment and effective use of eHealth applications. While munching on some leftover turkey this weekend, I was catching up on various blogs that I read and came across a post on the eHealthCentral blog on that caused me to think about Kevin’s comments regarding eHealth leadership in Canada.
The eHealthCentral blog post mused about the current situation in Australia. Like Infoway in Canada, the National E-Health Transition Authority (NEHTA) in Australia attempting to coordinate eHealth deployment. The eHealthCentral blog post notes concerns that “NEHTA’s powers are to some extent limited by its structure, and by the fact that there are too many government instrumentalities that have a finger in the ehealth pie, and too many vested interests at work in the industry.” The blog post further explores the complex environment in Australia, noting that:
“At a national level you’ve got DOHA setting policy for the primary care sector. At the State and jurisdictional level you’ve got State governments setting their own priorities and policies for the hospital sector. You’ve got Medicare, which is a division of the Department of Human Services. If you were trying to bake a cake with those ingredients, you’d have a persistent problem of them separating out.”
Trisha Greenlagh, a noted commentator on the UK eHealth market, suggested to the eHealthCentral blog author that “Australian ehealth needed a publicly identified leader at the helm.” Ms. Greenlagh stated that “We don’t really want a formal leadership structure” but, rather, “de-centred” leadership with a clearly identified spokesperson who can “articulate what is going on.”. She suggests that “It wouldn’t necessarily be the big guy on the big salary who is in charge. It would be a little more subtle and de-centred, just like as in an ant colony, where there is no chief executive ant. I do think a lot of the leadership will be from clinicians.”
Given the many criticisms leveled at Canada Health Infoway, I do wonder if perhaps are expecting too much from one organization, particularly given its governance structure. As Trisha Greenlagh notes, there are substantial benefits to having a recognized spokesperson, like Dr. Blumenthal in the US, who can tell the eHealth story in a compelling manner that catalyzes action and rallies support across disparate stakeholder communities.
My friend and colleague Dr. Kevin Leonard has, for the past few years, been passionately advocating greater patient involvement in their care along with greater electronic access to their personal health information. While Kevin’s Patient Destiny initiative seemingly focuses on what he calls “One Patient, One Record”, I think that the essence of Patient Destiny has to do with transforming our healthcare system through greater patient engagement in all aspects of healthcare delivery, from policy through to medical practice.
Patient engagement can take many forms. This morning, I read about what seems to a novel approach to patient engagement. The Health Mentors Program at Dalhousie University in Halifax, Nova Scotia, provides an opportunity for approximately 550 first-year students from a variety of healthcare programs to gain a better understanding of the daily challenges of living with a chronic condition from adult volunteers. Students enrolled in the program meet with the patient mentors four times per year and hear first hand from these mentors about their experiences navigating the health system.
Dr. Laurie Collins, faculty director for the Health Mentors Program, notes that the volunteers are eager to get involved:
“People with chronic illness don’t really get the care they’d like – in many cases they’re frustrated and dissatisfied … They really feel they’re contributing to the development of a better health care system.”
About a month ago I wrote a blog post about the “One Patient, One Record” symposium organized by Dr. Kevin Leonard. Well, tomorrow is the big day and I am hoping to experiment with live blogging and tweeting from the conference. Not sure how the technology will all work but I am going to give it a try. You check out more details about this symposium and other of Dr. Leonard’s initiatives to get patients more engaged in their care at http://www.patientdestiny.com
On behalf of Dr. Kevin Leonard who I greatly admire, I am posting the following information regarding the “One Patient, One Record Symposium. I plan to attend and hope that others in the Ottawa area will consider doing so as well.
Patient Destiny is once again hosting a “One Patient, One Record” symposium – this time in Ottawa on April 6, 2010 – please see attached invitation. In 2009, we launched a series of symposia that were aimed at creating a dialogue between patients and healthcare personnel – a dialogue focusing on patient access to their own health information.
Patient Destiny is proud to be offering this upcoming symposium as a CAPCH sponsored event – please see http://www.capch.ca website for registration details.
I look forward to hearing back from you and working with you on moving the patient empowerment agenda forward.
Thanks for your attention,
Kevin Kevin J. Leonard, PhD, Associate Professor, University of Toronto Department of Health Policy, Management and Evaluation (HPME)
Founder, Patient Destiny 416.464.7885 firstname.lastname@example.org