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.
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.”
Dr. Jay Mercer is an Ottawa family physician who divides his time between a fully automated office and Medical Director of the Client Services group at MD Practice Solutions Inc. Dr. Mercer speaks and writes frequently about practice automation for physicians groups across Canada and was involved in developing CMA’s physician website and patient portal. Dr. Mercer’s presentation is entitled “Meeting Patients Online to Actively Manage Chronic Illness”. Highlights include:
- 2252 patients in portal (1535 with PHR data); 138 physicians actively using portal
- Providing data to patients is very important; offer background information to prepare for next visit
- Positive patient feedback; interested in using portal functionality
- Patients will make good use of online access to their care providers
- Primary conclusions
- Most patients are already online – many are ahead of their physicians in online use
- Health info from outside the office will help better manage chronic outcomes
- Secondary conclusions
- Oldest patients will be the biggest users
- Patients can spell (and will correct your spelling)
- Acceptable use needs training
- Collect data in a structured manner or patients will invent their own structure
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 (www.patientdestiny.com), 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.
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