Farewell Kevin Leonard

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.

Mike

 

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 (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.

Mike

OPOR – The Patient Perspective

Perhaps one of the most powerful presentations during the OPOR conference was made by Doug Gosling, a 56-year man suffering from terminal prostate cancer.   Mr. Gosling offered a poingnant and very personal perspective on his use of the Internet to better understand and cope with his illness.  At one point, as Mr. Gosling shared the myriad of emotions he experienced over the past few years, you could have heard a pin drop in the room. 

Like me, Mr. Gosling has worked with IT most of his career. He applied this experience to his on-line quest and has thought deeply about how we might use this powerful tool to greater advantage.  His advice to the audience included:

– Stop producing more of the same.  He implored the audience to experiment with new ideas and new approaches.

– Better leverage what already exists including information, resources, and infrastructure.

– Identify and address the gaps. 

Mr. Gosling noted that there are many gaps to explore and that we should put more energy into exploring these gaps rather than re-creating what already exists.  According to Mr. Gosling these gaps include:

– The existing resources do not addess the entire patient journey.  

– Many resources seemingly ignore what Mr. Gosling refers to as “the emotional soundtrack” of journey.

– Access to resources is not universal nor is the information understandable in many cases to the layperson.

– Need more access to personal medical information.  According to Mr. Gosling there is a wealth of information about specific conditions an diseases but it is difficult to get access to one’s own medical information.

– The human element is missing.

While there were many good, informative presentations during the one-day event, I found Mr. Gosling’s to be the most compelling and the most useful.  We need to hear more from the potential users of Personal eHealth applications about what they need and the manner in which they want information presented.  As I have argued in past blog posts, I think that we need to take more a Product Management approach to developing Personal eHealth applications that starts with a firm understanding of what users want and how they will use on-line services and information as a tool to understand and manage their health.    We need to engage the end-user in the design of Personal eHealth applications, not develop applications that address what we think their needs might be.

I applaud Mr. Gosling for having the courage to share what is a very personal story in order to advance the development of Personal eHealth applications.  I only hope that we truly listen to what he has to say.  You can learn more about Mr. Gosling’s journey and his thoughts on the power of IT to help each of us better manage our health at his blog http://www.talkingaboutcancer.com/

Mike

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?

  Mike