Patient Destiny

Is Canada leading the US in healthcare delivery?

I bet everyone would like an answer to that question. And, at the surface, it does appear to be a simple question. But when you begin to examine it more closely, it really isn't simple at all!

What do we mean by "leading" in the first place?  Leading by what measures or indicators. If we are thinking about total healthcare spending, the US spends significantly more in real dollars - of course, just consider the population size. But if we examine percentage bases, and consider, for example, a percentage of GNP (Gross National Product - a standard macro economic measure), then the US continues to out-spend Canada ... and the rest of the world for that matter - being close to 15-16% with Canada and most G8 countries falling under 10%. That means that the US spends roughly 50% more money per capita than anyone else on the globe.

But what do we get for that extra spending? Is the US system performing better than all of these other industrialized countries? How do we measure this performance?

And therein lies the trouble - how do we in fact measure who is doing best? If I want to bet on a baseball or hockey game, I can find out the odds based on past performances or current team records in the league (like the won-lost stats or winning percentage). I can then make a choice on a bet based on these odds. If I want to place an investment on a stock, I would research and find some of the most secure but best performing common shares in recent years and months! But in healthcare, where do I go to find the best doctor at doing hip replacement? Where do I find the best doctor period? Hell, where do I just find a doctor?

These are the questions that must be answered and we are NO where near answering them. The medical profession does not have a long history of accountability (except to themselves) and so getting the outcome statistics will be very difficult. If we are to manage our own healthcare effectively, however, then this information is vital.

In 2004, Washington established the Office of the National Health Care Information Technology (IT) Coordinator with the first top executive being David J. Brailer. Although no longer in the job, he established a clear objective of having an interoperable comprehensive EHR (Electronic Health Record) for every person in the US that wants one by 2014 (ten years out).

Will he be right?  I am not sure but I do know that there is a lot of work to be done. In addition, the objectives need to stream out from there. Having an interoperable EHR is only the beginning of the tools that patients will need to navigate through the healthcare system of the future. We will need more information (such as data on  the rating of doctors and hospitals) as well as decision support tools to aid us in making the best decision for us.

All this work must start now...we have to be angry and militant about this philosphy. Consider our name ... Patient Destiny - it was meant to be bold and distinctive. Another initiative, started by Steve Case (from AOL), has begun and it's called Revolution Health - different initiative but just as bold a moniker and just as strong a commitment! We are not alone! But we each must help to play our part!!

Let's roll (Hill Street Blues) ... and be careful out there.

LET'S HEAR FROM OTHER BLOGS!!

As we continue to mention, more and more sources, including websites and blogs are focusing on patient empowerment and ultimately, patient destiny. The National Review of Medicine just published in their Febraury 15, 2007 issue, the top health blogs in a number of areas. Here they are below with their links embedded. Just click on each to see more on them and their individual objectives.

1. Best Medical Blog: The NHS Doctor

This is from the United Kingdom and is taking place within a massive re-structuring of the health care system in Britain.

2. Best New Medical Blog: Flea

A physician who still makes house calls - check it out!

3.Best Clinical Sciences Weblog: Anxiety, Addiction and Depression Treatments

Focuses on mental health news and perspective

4. Best Medical Technologies/Informatics Weblog: The Healthcare IT Guy

Very much focused on the technology piece relating to personal health records.

5. Best Patient Blog: The Furry Monkey

The author has been documenting her experiences with cancer - in a very special and unique way.

Finally, I would like to make a special point today about inviting comments and feedback. As I have mentioned in the past, the goal of this site is to help you - please send me your questions and I would be pleased to help with them as best I can.

I Just Could NOT Breathe

First, as a follow-up to our blogs this week, I came across an announcement in the Wall Street Journal that Patients in Duke University's health system can now go to one Web site to pay medical bills, schedule doctor appointments and eventually view their personal medical histories. Have a look at some of their recent developments.

Second, at the end of every week (or at the beginning of each new one), I would like to recount a personal story - in order to bring patient destiny to life, if you will. I started doing this in our first week of blogging when I described my anaphylaxis episode and my fear-plagued trip to the Emergency Department (this is a re-print of the opening pages from my book). Since the book has been published, I of course have gone on to further episodes and other challenges in managing my healthcare. As a result, I will continue to share with you my ventures "live from the pages", as it were, in order to continue my story. Today, I want to describe a very critical time in my life that started in February 2004.

I was on my way to teach an early morning class at University of Toronto when suddenly I couldn’t catch my breath. This is not unusual for someone with asthma – especially when the cold, damp morning air is often a stimulant for an asthma attack but something was different this time… something far more serious. My asthma medication wasn’t working… it had to be something else!

As a result, I took my time walking to work in order to catch my breath. Once class was over, I immediately visited my GP. He asked me about my heart and whether any tests had been done on it. I advised him that we had not and I was soon on my way to a local clinic for routine heart function tests.

Who is working on Patient Empowerment?

As the Patient Destiny movement progresses, we will find more and more people that are taking up the cause. Yesterday, I provided a list of blogs that are related to patient empowerment. I will provide another ten blog contacts at the end of this post.

I spent a very productive day at a conference in Vancouver that was put on by the Centre for Health Services and Policy Research at the University of British Columbia. The topic was public engagement - basically how do you get the public's input into the whole healthcare debate. There were many good presentations focusing on the need for public or patient engagement; but little on what the public has been asked or what their input is. In other words, there is finally recognition that the patient group must have a say, but we just haven't done a good job, at least not yet, of getting their feedback and, more importantly, incorporating this feedback into public health policy.

That is not to say that the concept of empowerment is not moving along. In the most recent edition of a health indusry periodical, Canadian Healthcare Technology, there is a report on a patient portal at a large hospital in Toronto; the objective being to get patients access to their information so as to make better decisions. Further, a United Kingdom (London) e-journal called the eHealth Insider reports on great advances being made in a pilot project which allows patients to protect their information while controlling access (i.e., managing their privacy and security concerns). Please check the links to find out more.

Who else is out there?

As mentioned briefly in yesterday's post, there are many people that have taken up the cause of "patient empowerment". I listed three general areas with links to their webpages so that you can find out more. It is very helpful to know that you are not alone - and that the struggle is worthwhile. If there is one thing that I have learned it is that "misery truly does love company"!

As an academic very active in research, I attend many conferences. In fact, I will be attending a conference tomorrow on our topic - patient voices! These are a great forum for sharing ideas and reporting on work in progress. Often a question following a conference presentation can open one's eyes to innovation that the researcher never thought about. It is also very useful to see what others are doing and learning from their ideas.

The big reason for a conference, really, is to network. It is so motivating to find others with like ideas and strategies; research networks often get their start from conferences.

In the Internet world, blogs are beginning to fill this very important void of "topic depth" in our communication.

Where do I go for support?

Over the past week of posts, I have tried to present a strong argument for the need for patient empowerment. To be sure, more work and research needs to be done so that new information systems in the future involve patients in system design and also measure the health outcomes that result of this empowerment.

The first question many people have asked once we have provided an overview of Patient Destiny is - what's the first step? "This philosophy may be great and all, but how do I do it?"  "How do I start to begin to take control over my healthcare?" "How do I get to access information?" "Will my doctor provide me with the information that I need to assist in the decision making?" "I want it but how do I become empowered?"

These are very important questions, of course, but the answers are not so straight-forward! This will take work and much time - but we must begin now! Over time, with more and more patients demanding access to their personal health records (or PHRs) the healthcare delivery system will be forced to adopt technologies that provide the patient access to much needed information pertaining specifically to their own health. And this is only part of the solution: in addition, patients want to know about options (with treatments, second opinions and networking with other similar patients) in order to make very informed choices.

More on the 3C - Consumers with Chronic Conditions

In the recent literature, the development of programs for the 3C is being referred to as the creation of a chronic disease model (CDM) infrastructure. Within these types of programs, patients with specific chronic illnesses are supported through special initiatives, partially through improved services and some that are information-based. These may include the creation of a detailed roster of patients (conditions along with co-morbidities), fast-tracking patient scheduling for diagnoses and treatment, tracking utilization of services, offering innovative support mechanisms (such as call centers), coordinating services and providing patients access to their own health information. Some CDM even offer patients an access to decision support tools that then allow them to more proactively managed their conditions in order to seek attention before their status deteriorates to acute levels.

The preliminary research findings has indicated that the return on investment within a CDM framework is in the order of between two and four to one (various research initiatives). In other words, for every unit invested in a structured chronic disease management program will ultimately save the delivery system somewhere between two and four times that amount by becoming more efficient.

Does Information make me Better

People need infromation to support decision making. For example, how do you know what clothes to wear in the morning (e.g., shirt, sweater, jacket, overcoat) if you don't know what the weather is expected to be that day? Information access, retrieval and processing is critical and is often overlooked as the first step in any decision making process.

For patients, information comes in many forms and from many sources. We can obtain information that is very generic in nature - about food habits and eating effectively. We can learn more about our illness through various periodicals, books and websites that describe the very nature of the disease (or condition) and the treatment options. We can even gain information from other people that have had similar experiences - more and more websites in the health domain are supporting this form of social netwroking.

Perhaps the most powerful form of information, however, will come from access to your own personal health information. This means that places where you health data reside (such as your doctor's office or your clinic or hospital) must allow you computer access to your information. As you can imagine, there are many hurdles which forces delays and abandonment of some significant eHealth applications to date. In fact, outside of some rare cases and often with only partial implementation (usually on a pilot or research basis), this has yet to be developed globally.

What can I do with my Health Information

More and more, people are getting the idea and catching on to the concept that patient empowerment may just be "a good thing". Not too long ago, this was seen as a fruitless exercise with little possibility of ever happening. However, today more people are buying in to this concept.

One foundation, the Markle Foundation, is leading the way by providing vision and research. On their website, they describe the results of a recent survey (conducted by Lake Research Partners and American Viewpoint).

More than two-thirds of U.S. residents said they believe that having access to health and medical information online would give consumers more control.

Twenty-seven percent of U.S. residents said they feel that they currently have too little control over making healthcare decisions, according to the survey.

Ninety percent of respondents said that if they had online access to their health information, tracking their symptoms or health changes over a secure network would be very important. In addition, 82% of parents said they would be interested in tracking their children's health records and services, such as immunization dates, online, according to the survey.

Why do I need my Health Information?

Yesterday, we talked about the need to move to a more "wired" and electronic health industry; in essence focusing on the industry savings potential. Today, let's discuss the patient perspective. Who will be the first group of patients to embrace change and all of the potential to be gained from Personal Health Records (PHRs)? In all likelihood, it will be that segment of the population that is the most frustrated with the current system and the one that has the most to gain. This frustration will come from the group that most frequently interacts with the health system today - i.e., the chronically ill.

Research in a number of countries estimates that about 40% of the general population has a chronic condition - which can be defined as a life-long illness or a disease that has long term implications. To ensure a proper frame of reference for comparison with other studies and because this is such an important health delivery segment, we propose to define this group as "consumers with chronic conditions" and provide the name of "3C".