One Patient, One Record – Dr. Jay Mercer

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
• Insights
  • 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

Mike

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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

Heads up – One Patient, One Record Symposium

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

Mike

“One Patient, One Record” Symposium in Ottawa

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.

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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 k.leonard@utoronto.ca

http://www.patientdestiny.com

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