Patient Destiny

Next Event

Over the last couple of years, Patient Destiny has been involved in a number of different types of events in order to bring more and more awareness to the need for patient engagement in healthcare management.

The next event that we are planning is entitled "An Evening with Patients". We plan on hosting an event where patients (of all types - chronic disease, short term illness and even the healthy who are trying to get healthier) can have a chance to hear more about our movement and how we are trying to improve health outcomes by involving patients in the management of their own care and the system.

Please return to this site where we will publish more over the next few weeks - identifying venue, guest speakers and agenda.

It is hoped that one outcome of "Our Evening" will be to create a Board of Patient Advisors who want to be involved in shaping our common voice.

 

 

What is happening out there?

As stated just over two months ago, the feeling is that we (healthcare) are getting very close to a major shift in the thinking about patients and their roles. I continue to become more and more positive about the feedback from other healthcare stakeholders - who were at one time, very reticent about patients becoming more empowered and effective decision makers.

This is not to say that we do not still have a long way to go - but it does look like our journey is attracting more people who want to see Patient Destiny become a reality.

 

Upcoming Invited Talks

As mentioned in the previous blog entry, there is certainly more buzz in the healthcare field in Canada about patient engagement and the need for patients to become very involved in managing their own care - everything from decision making to doing their own research to reaching out to other patients who have had similar experiences.

On September 21, I will be Chairing a conference for the Ontario Hospital Association (OHA) on Social Media and the relatively new phenomenon called ePatients - patients using eHealth and the Internet to help navigate the healthcare system.

Please feel free to download the conference brochure on the left of this page to learn more and to register.  If you attend, come up and say hi!

Progress is being made - finally!!

After many, many years of advocacy, research, volunteering and yes, even prayers (!), we are starting to see a massive change in the philosophy of healthcare delivery personnel -- maybe it is a good thing if patients were more involved in managing their care!

Over the next little while, you will begin to see more material posted here on the progress that is being made. We will discuss the role of the patient, the family caregiver and the provider in this movement. In addition we will provide links to other sites and initiatives that share the vision and are working toward making this vision a reality.

To begin this revitilization, here is a short description of what we refer to as the patient role.

Patient Destiny: The Role of the Patient in Patient Care

There is an inevitable evolution taking place in health care. It’s called Patient Destiny, and it is rooted in the fact that patients are beginning to demand immediate and timely access to their own personal health information. Patients want this access so they can partner effectively with healthcare providers in the management of their health and wellness.

The ultimate goal of Patient Destiny is an informed patient: a person who has all the appropriate information in hand and who is, thereby, able to work within the system to obtain the best healthcare services and outcomes. With a vision of “One Patient, One Record,” Patient Destiny believes in developing an electronic health record (EHR) for all Ontarians that can be accessed by the continuum of healthcare providers as well as by patients themselves, which we believe will then lead to improved health outcomes.

Through organized “One Patient, One Record” symposia, Patient Destiny is following an innovative approach by inviting both patients and healthcare personnel to the table to engage in dialogue about how to promote patient eHealth. The results of discussions to date show that both groups strongly support patients being able to access their health information. Efforts are underway to achieve the following recommendations:

• Raise awareness with all stakeholder groups (e.g., patients, caregivers, healthcare personnel) of the importance of accessing health information in managing patient care.
• Encourage multiple stakeholder engagement in the design and development of pilot patient eHealth projects to respond to the increased awareness and demand for personal health information.
• Develop key indicators and outcomes to be measured in these pilot projects to determine the value of patient eHealth.

Town Hall Event - May 17th

Patient Destiny is presenting at its first Town Hall event.  This event will be held in the riding of Toronto-St. Paul's (Ontario, Canada) and is being hosted by the Federal Liberal Minister Dr Carolyn Bennett. The topic of the Town Hall will be patient eHealth solutions and the role that they can play in patient engagement.

It is strongly believed that the only way to sustainability of the Canadian healthcare system is active patient involvement in the management of their own care. The only way that can be accomplished is through access to one's own health onformation; and this is only feasible within a world of fuctioning eHealth Solutions. To find out more, please download the recently added Town Hall Agenda document to our site.

In addition, we have added two documents emanating from the Ottawa symposium:

1. Full report from the Ottawa "One Patient, One Record" symposium

2. A Case Study illustrating the Value of One Record

More Updates

Please note that there are two new documents for download. These are the:

1. Final Report from Day Two (September 2009 workshop) - "My Blood Work: I Want It!"

2. Invitation for the upcoming OPOR in Otawa

Patient Destiny partners with CAPCH

There has been so much development in the patient empowerment and eHealth space over the last 18 months that staying on top of it all has been very difficult. Our original mandate has always been to empower patients through the access of their own health information. Once this is accomplished, there will be radical ongoing change to healthcare delivery.

We realize that getting access is only the first step - but this step has been very hard to achieve that it became our sole objective over time. Ultimately, we want to see every Ontarian (and beyond) gain access to their health file ... if they want to have this access.

In addition, during our journey, we have found other groups with very similar objectives! One such group is CAPCH, which promotes a bigger vision where many people centred objectives are implemented. In order to help both groups, we have formed a partneship, whereby CAPCH is now supporting Patient Destiny and all of our "One Patient, One Record" symposia.

I will be posting more now on a regular basis as we progress to our next OPOR - look to this space for future announcements over the coming days and weeks.

One Patient, One Record - Day Two

Patient Destiny is now following up on the VERY successful first event - Day One. This was a full day symposium held at the University of Toronto April 21, 2009. The Final Report is now available of this site for download. A hard copy can also be obtained for a modest fee (including shipping costs).

Our next event - Day Two - is a half day workshop scheduled for September 29, 2009. The agenda and background information is also available for download on this site.

In essence, our objective is to begin the process of gaining access to patient health information gradually over a period of steps. The first step is blood work results.

We believe that blood results are a very common diagnostic tool used for many illness and disease groups. Testing patient access with a limited portion of the electronic record will allow for much learning at very little expense and risk.

I will be posting more detail over the coming days. I look forward to  all of your comments and a very "healthy" debate.

One Patient, One Record (OPOR) Symposium

OPOR Symposium Background:

In today’s healthcare system, the objective, put quite simply, is to treat the patient. One can argue that it is much more complicated than just “treating patients” – it is about many complex factors including illness care, wellness strategies, population and public health initiatives, and varying degrees of trauma management. While this detail is accurate, from a very broad perspective, health system operations are “all about the patient” – if there were no illness or trauma, there would be no need for a healthcare system.

 

Yet, even though the patient group represents the fundamental foundation of the healthcare system, patients have seldom been viewed as more than a “by-product” or “side-effect”. To illustrate, patients are not typically involved in (i) setting healthcare policy; (ii) conducting and disseminating research; (iii) coordinating patient networks; (iv) providing or managing individual care; and (v) evaluating the performance and outcomes of varied healthcare delivery plans.

 

Innovative research that focuses on putting information in the hands of the consumer in healthcare – i.e., the patient – is now attempting to achieve two major objectives:

1. Bring the healthcare system in line with many other industries by incorporating consumer inputs;

2. Improve the adoption of information technology, and thereby increase eHealth benefits, by combining the efforts of two groups – the current active stakeholder decision makers (i.e., healthcare personnel) with the patient group.

 

Symposium Objective:

 

To begin the dialogue between patients and the healthcare system to arrive at One Patient, One Record. 

Ultimately, we believe in developing an electronic health record for all Ontarians that can be accessed by the continuum of healthcare providers as well as the patients themselves which will then lead to improved health outcomes. 

 

The Patient-Physician Paradigm

Once the patient accesses their healthcare information, they must interact with the healthcare system to meet their health needs. Diagnostics are determined, treatment is executed and post-treatment follow up is completed and measured.

 

As a result, systems must allow and promote patient–physician interaction … and action!! We need to allow patients the freedom and time alone with their healthcare information BUT not alone with their problems! This is where the healthcare delivery system needs to step in. Research to date has identified a very specific patient group that is eager to challenge the status quo. We refer to these patients as Consumers with Chronic Conditions (or the 3C’s). This group is very knowledgeable about their condition(s) and extremely motivated to become fully empowered – both individually and collectively!

 

Methodology:

We anticipate an attendance of 100 people (excluding speakers and support personnel). The symposium will be set up with 10 tables with each table comprising five healthcare personnel and five patients. At different points during the day, we will have discussion on five previously prepared questions. After each question has been discussed, each participant will be asked to confidentially vote. Votes will be tabulated and reported back at the end of the day.

 

The five questions will cover the areas of access, content, use, privacy and outcome measurement. The answers will yield a framework for an action plan on how to move forward in the development of one electronic health record accessible to both patients and healthcare providers. 

Attendees:

This will be a very special symposium because we are offering a dialogue opportunity between two distinct stakeholders – healthcare personnel and patients. This event will bring together key healthcare decision makers and service delivery personnel in direct communication with highly motivated and informed patients. Further, the objective of the day is to create a firm deliverable: an action plan to move the Province of Ontario forward regarding patients accessing health information or, if you will, to provide a framework for “ePatients”.

 

Patients:
Patients will be recruited in several ways: contacted through disease associations and foundations, cross-patient representatives and communications to the public at large through health providers and the media. Each patient must apply to attend; a committee will review the applications and select the top 50.

 

Healthcare Personnel:

Healthcare personnel are comprised of providers, administrators, researchers, academics, vendors and funding organizations. They have been invited to bring together as representative a group as possible in terms of perspectives, organizational relationships and geography. We are also targeting 50 attendees from this group. 

 

Fee Structure – Adopt-A-Patient Program:

The registration fee is $200 for each healthcare personnel. This is meant to cover the cost of two people – the healthcare personnel and a patient (basically, $100 per person). The patient’s fee is subsidized to support and promote attendance. 

 

Step Ten: Final Step

Step 10: Reach out to other like patients to complete the circle as this promotes awareness and mentorship

We must begin to invite others to support and participate in our cause. Why? Because this cause is about our healthcare system and how it affects all of us – the users (all patients and their families) and future users (all of us).

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Today, there is no regular forum or an association in Canada (as in almost all countries around the globe) that speaks for all users of our healthcare system. This is even more strange when you consider that, in Canada, all of us are the ultimate payers as well. This is what Patient Destiny is all about.