Sunday 23 December 2012

Personal Choice is the Agent of Change

When it comes to our physical health, we are the ultimate decision makers.  What we eat, whether we take our meds or not, how much exercise we get, these are some of the choices we make.  The healthcare system repairs our bodies when they are not functioning properly, and electronic devices can provide warning lights to alert us when something may be breaking down, but we are responsible for maintenance, making sure our bodies have what they need to operate.    
Do we have the same level of control over our emotional health? Can we choose what we are exposed to; choose to experience only healthy situations?  No, but we are in control of how we react.   Last week, like so many others around the world, I was thrown off balance by the events in Newtown.  The news of the killing of 20 kindergarten students affected me like an illness, scaring my belief system and decimating my faith in humanity.  The tragic event weighed on me for days as details slowly emerged.  There is no cure for this, no therapy, or medication, no specialist to fix this illness.  Are we helpless?  Is our only option to allow time to disolve this event into a distant memory?
Just as we can be intentional in our decisions to improve our health, so too can we intentionally respond to tragedy in a way that improves and strengthens our emotional health.  26 Acts of Kindness is a movement to honour the lives lost in Newtown.  The idea is to do one act of kindness for each life lost.  The actions are trending on Twitter at #26acts and there is a Facebook page documenting acts of kindness.   You will also find debate brewing on many aspects of the campaign but I want to focus on the positive benefits found in intentional act of kindness. 
Being kind to others and helping out are behaviours we teach our children, we want them to be respectful and polite and to experience the uplifting feeling that comes from selfless acts.  As adults it becomes our responsibility to make sure we continue the behaviours throughout our lives.  
Robert Fulghum got it right and his wisdom, the insights he drew from children just like those in Newtown, was never more relevant. 
All I Really Need to Know I Learned in Kindergarten.  These are the things I learned:
  • Share everything.
  • Play fair.
  • Don't hit people.
  • Put things back where you found them.
  • Clean up your own mess.
  • Don't take things that aren't yours.
  • Say you're sorry when you hurt somebody.
  • Wash your hands before you eat.
  • Flush.
  • Warm cookies and cold milk are good for you.
  • Live a balanced life - learn some and think some and draw and paint and sing and dance and play and work every day some.
  • Take a nap every afternoon.
  • When you go out in the world, watch out for traffic, hold hands and stick together.
  • Be aware of wonder. Remember the little seed in the Styrofoam cup: the roots go down and the plant goes up and nobody really knows how or why, but we are all like that.
  • Goldfish and hamsters and white mice and even the little seed in the Styrofoam cup - they all die. So do we.
  • And then remember the Dick-and-Jane books and the first word you learned - the biggest word of all - LOOK.
The decision to participate in 26 Acts of Kindness is irrelevant.  We find these campaigns all around us in times of tragedy.  It is ultimately a small gesture, at a time of year when there is a great deal of focus on helping others.  Will it matter?  Will it do more than make us feel better? Only if it is a catalyst for lasting change.
This New Year’s millions of people will vow to eat better and lose a few pounds.  New Year’s is a trigger for those decisions but maintaining healthy behaviours takes commitment and a change in lifestyle in order to see results.  26 Acts of Kindness is no different, this movement is a trigger.  The lasting influence will only be found in the choices we make as we go forward.   
Make your choices count. 

Sunday 9 December 2012

The Risks and Benefits of Making Genome Data Open and Free


The Globe and Mail kicked off a series,  Our Time to Lead exploring the social implications of genome research in Canada.  Researcher, Dr. Stephen Scherer at Toronto’s Hospital for Sick Children is a champion of Canada’s involvement in the Personal Genome Project (PGP) and for making massive amounts of genome data open and free.

This controversial project has a plethora of risks (over three pages of identified risks, discomforts and harms in the consent form) for potential participants and one identified benefit “Participation in the project will likely provide a unique educational experience for participants”.  The risks range from the stress associated with learning that you have an increased genetic risk for a specific illness  to the risk of someone producing a synthetic copy of your DNA and planting it at a crime scene.  Add to the risks the fact that the analysis of the genome is not guaranteed accurate “The PGP cannot make any guarantees about the accuracy or completeness of any such analysis” and the fact that it will cost you minimum $4,000 (if you live in Toronto) to ensure your successful application will go forward, you have to wonder why anyone would consent to participating.

Yet I am considering it.  This blog is dedicated to advocating for control of personal health information and the genome holds great potential for individuals who want to manage their health, but it is early days for the practical utilization of genome data.  The PGP will advance the practical applications for health care consumers and I applaud that.  In an earlier blog,  My Quantifiable Self I featured John Wilbanks and his work on Pooling our Medical Data.  In his TED talk he speaks to accessing his genome through 23 and Me, a private genome mapping company in California and how he crowd sourced his genome to learn even more through international genome researchers and analysts.  His activities with his genome were very similar to what PGP is proposing.  John is a genome adventurer, I have a lower tolerance to risk.

Here is my dominant issue with participating.  To the best of my knowledge (and I am not a health care provider or scientist) most diseases and illnesses are believed to be caused by both genetic and modifiable risk factors.  Take Alzheimer’s as an example of a disease that has been linked to a specific genetic marker.  In a quick scan of Alzheimers Disease Facts and Figures 2012 published by the Alzheimer’s Association, the genetic risk factor is clearly identified but there are other factors that may contribute to the disease including cardiovascular disease and the modifiable risk factors associated with it (physical inactivity, smoking, poor eating habits). 

If I discovered through genome mapping that I had an increased risk of Alzheimer’s disease I would welcome the opportunity to have my personal health information included in a study that mapped my genetic risk for the disease against the other risk factors in my life.   I would want the legacy of my genome donation to inform future research that links an increased genetic pre-disposition to the disease, to modifiable risk factors.  Unfortunately, as it seems to be structured now, the PGP doesn't allow for that.  While the PGP does require your personal health record and completed medical history, it only includes a point in time picture of your health, not a continual record of health. 

The awareness of increased risk for Alzheimers would inspire me to make changes in my lifestyle, that activity will not be recorded in the data contributed to PGP and therefore will not be measured against my future risk for the disease.  I would want research to show that by managing my health better, I was able to mitigate my risk and beat the odds.  PGP doesn’t allow for that.

If we focus on the genetic in isolation of behavioural and environmental factors, we lose a tremendous opportunity. Why don't we create a genome portal for Canadian’s?  A portal would contain the genetic data of all participants and the managers of the portal would be the conduit between qualified international researchers and our data.  International researchers could identify potential participants and contact them via the portal.  I would much prefer to be provided with opportunities to participate in studies that have been screened by the PGP, studies that my genome and personal health information could provide valuable contributions to rather than putting my entire genome data online with my health history.

As an individual considering my participation in such a study and as an advocate for personally controlled health information, I’m not yet convinced the benefits of my participation in PGP outweigh the risks, but I will continue to watch this important project and perhaps, one day, add my genome for consideration.

Sunday 2 December 2012

Sunday 25 November 2012

Is any diagnosis ‘terminal’ anymore?


“It’s terminal! Go home and put your affairs in order.”  By definition, a terminal illness is a disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient within a short period of time

Is any diagnosis really terminal anymore?

Medical advances are occurring every day, clinical trials are contributing to our knowledge of what works/doesn’t work and patients around the world are sharing information in online communities.  Is it feasible to think that our doctors are on top of all this information for every illness in order to accurately declare that an illness cannot be cured or adequately treated?  Maybe we need to redefine the word or, better yet, get rid of it entirely. 

This is not to put false hope in the heads of patients exhausted by attempts at ineffective treatments whose quality of life has deteriorated while fighting an illness.  Those patients may very well accept that everything has been done, and accept that their illness will take their life in a reasonably short period of time.  But, what about patients like Sam (not his real name), a middle aged man I came to know last week.  Not too long ago Sam was going about his normal routine, working, enjoying the summer, feeling fine but he started falling asleep at his desk, and it happened more than once.  A trip to his doctor and an MRI later showed he had brain cancer.  The prognosis was grim, chemotherapy and radiation were offered to buy him a few months.  He was told it was terminal and he should ‘get his affairs in order’. 

About the same time,  on the other side of the Atlantic ocean, thirty-nine year old Salvatore Iaconesi was given a similar brain cancer diagnosis but he decided to crowd source his opportunities.  He cracked the codes to his clinical records on September 10th and posted them online inviting the world to respond to his CT scans, MRIs, lab notes and glioma diagnosis in whatever way they want.  Salvatore also spoke at TEDx in Rome The Cure  where he explained how he took the hundreds of thousands of responses to build his personal strategy to combat his brain cancer.  The responses are all stored on his website for anyone to access.  His most recent posting indicated that he will soon be undergoing surgery, the first step in his strategy. 

This personalized approach to a treatment strategy makes so much sense but it takes time to identify all the options, balance the pros and cons, and make an informed decision.  Perhaps instead of advising people to ‘get their affairs in order’, doctors should give patients their data and simply acknowledge that they cannot cure or treat your illness and without effective treatment your illness will kill you in the near future.  With your data in hand, it is up to you what to do next.   

In the same way that we donate our bodies to science why don’t we publish our rare diagnosis and clinical data online to share with a community of people looking for the same answers? Facing a terminal diagnosis, I would do all I could to save myself but if that were not possible I would want the evidence of my efforts and outcomes recorded so that others could learn and benefit. 

It’s your health.  It’s your health information.  Manage it well. 

Monday 12 November 2012

Even Fainting Goats have heroes


Meet epatient Dave!!   I encountered Dave last year online through a TED Talk and was inspired by his story of empowered patients and survival.    Dave expounds on the idea that the most underutilized resource in healthcare is the patient and he should know, he beat the odds and is alive today to tell his story.  Dave deBronkart: Meet e-Patient Dave 

 “e-Patient Dave” deBronkart was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival time at diagnosis was just 24 weeks; with tumors in both lungs, several bones, and muscle tissue, his prognosis was “grim,” as one web site described it.  He received great treatment at Boston’s Beth Israel Deaconess Medical Center: his surgeon removed the extensive mess (laparoscopically!), and the Biologic Therapy program helped him participate in a clinical trial for the powerful but severe High Dosage Interleukin-2 (HDIL-2). His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease. His remaining lesions have continued to shrink.  You can follow Dave at epatientdave.com.

The amazing element to Dave’s journey (beyond his survival) was that he learned about the specialists and clinical trial that saved his life on the internet from other cancer survivors, not from his doctors.  Dave is now well known for the #epatient movement but I wonder how intimidating it was for him at the time of his diagnosis to be that voice in the wilderness, working against the healthcare system to get control of his data to save his life.  I hope that Dave is feeling some satisfaction these days in that his voice continues to contribute to the ripple effect of the empowered patient that is finally being heard and understood.

In the US, the Affordable Healthcare Act (otherwise known as Obamacare) mapped out a plan to incent doctors to have their patient’s access, share or download their records online.  In order to receive the Incentive, doctors have to prove that 5% of their patient’s access download or transmit their medical records.  5% is a small start, but it’s a start.  With the American election now over and Obama securely seated in the White House for the next 4 years, the work on empowering patients through Meaningful Use can continue in the United States.  NOTE:  Apologies for the physician-centric hyperlink, there is sadly little education material out there on Meaningful Use for the people who need to understand it most, healthcare consumers. 

There is a lot of policy debate and medical opinion out there about patient access Rights and Responsibilities 101, but the success of empowering patients will only come from one place.  It will come from individuals recognizing and demanding control of their health information.  Dave did it, you can do it too, just say Gimme my Dam Data.

It’s your health information.  It’s your health.  Manage it well.  

Monday 5 November 2012

How do we value Personal Health Information

This week I had coffee with a colleague and the conversation came around the challenges of accessing personal health information.  The concept of a personal health record was new to him and his first and immediate reaction was “I don’t want to control my health information”.  The thought of managing his health history was overwhelming; he instinctively believed it to be beyond the time, energy and expertise that he had to offer.  He saw no value in it.


 I smiled and said “in 15 seconds I can convince you that you DO want to control your personal health information”.  The gauntlet was thrown.

My colleague is a business professional in his early fifties, successful with a loving family and no significant health issues.  “Do you travel often?” I asked.  “All the time” he responded.  “What would happen if you collapsed in another city, province or country?  Would you want emergency personnel to know about any health conditions, prescriptions, allergies, what blood type you are and where to reach your emergency contacts?”  A light went on.  He was beginning to understand the value of his health information, what it could mean in an emergency situation, how it could potentially save his life. 

How we value our health information differs for each and every one of us depending largely on our current health status.  While I don’t have the statistics at my fingertips (although I’m sure there is a study out there somewhere), I’m certain that the value we place on our health information increases when the condition of our health decreases.  My colleague is a healthy guy, he doesn't think about his health information because he doesn't really think about his health.  Taking our good health for granted is just human nature.

A few days ago I read about a young woman who probably never takes her health for granted. Suleika Jaouad lives in New York City and is chronicling her experiences dealing with cancer in Life, Interrupted .  Super storm Sandy disrupted more than her access to cable television and public transportation, it disrupted her chemotherapy treatments.  She was in an evacuation area and had no electricity, hot water, cell phone service or heat.  This week she wrote about the impact of Sandy.  “For me, as a cancer patient, it also means that it is challenging to get a hold of a doctor, find my way to a hospital or get emergency medicine if I need it. Sewage mixed with the storm water flowing in the streets, and I was worried about the risk of infection.” For her, the value of having access to her personal health information may be the ability to quickly access treatment in another city when disaster hits. 

At the opposite end of the health status spectrum, a friend commented recently that her eye glass prescription had been sitting on her kitchen sill for 3 months and wouldn't it be great if she had it electronically and didn't have to remember the piece of paper.  To her, the value in having electronic access to her prescription information was the convenience of not having to remember a slip of paper.

Our health issues are important to us whether we are coping with a serious illness that involves multiple interventions or we are inconvenienced by the need for a stronger prescription to address our nearsightedness.  When dealing with a health issue, we want solutions.  Taking control of our personal health information can make finding and managing the solutions more effective and efficient and, therefore, valuable.  

It’s your health.  It’s your health information.  Manage it well.

Sunday 28 October 2012

Sharing is nice but optional


When you encounter discussions about electronic personal health information you quickly identify two camps; those who are concerned about security and privacy and those who promote an open source platform for sharing health information.  Both are valid and both are part of the new paradigm of digital health information.  Sharing is a choice but it's a choice that provides solutions never before available.  

Venture Capitalist Vinod Khosla made waves recently by suggesting that technology will replace 80% of doctors during his recent Innovation Summit Keynote Address.  I question the ability to calculate the 80%, it’s quite the bold statement (and I am one who applauds measurable outcomes) but I don’t dispute the theory.  Technology has already changed our current healthcare reality by changing the way we partner with healthcare providers and how we value their service to us.  While healthcare professionals will continue to be needed to provide diagnosis and treatments, healthcare consumers are taking on the role of subject matter experts when the ‘subject’ is their own health. 

Here are two great stories in the making.

Richard& Ivan, 10,000 miles apart – a year ago Richard lost 4 fingers from his right hand, around the same time, Ivan created a mechanical hand that could be worn and operated by a person’s actual hand.  Richard lives in South Africa and was searching the internet for a solution to his health issue and Ivan lives in the US and posted a video of his mechanical hand on YouTube.  The internet brought them together and for almost a year, the two have been engaged in an online collaboration to equip Richard with a prosthetic hand.  They are crowd sourcing funding and posting a blog of their progress.  While they have never met in person, they have bonded over a shared goal; to develop and share an accessible prosthesis design with finger amputees all over the world.  You can read about their story here Coming up Shorthanded  

Matt Mattox, @jrmattox has embarked on an interesting journey over the past year to measure his quantifiable self.  Using a variety of digital devices in a ‘lifestyle experiment’ he was able to lower his cholesterol and theoretically reduced his risk of heart disease.  What is interesting is his comparison of what information his doctor had access to (through lab tests and visits) and what Matt compiled using devices that monitored his blood pressure, weight, diet and sleep patterns.  In reality, few of us would opt to constantly monitor our health status, however, there are measurable results in Matt's lifestyle experiment that illustrate the importance of healthcare consumers being an active partner in their health care.  Matt’s story can be followed at Quantified Self and the Future of Healthcare

The future of healthcare is here and evolving quickly.  The answers do not lie with government policies or insurance company programs, the answers will be found with empowered health care consumer who demands to take control of their personal health information and uses it to improve their health.

It’s your health.  It’s your health information.  Manage it well.  

Wednesday 24 October 2012

My Quantifiable Self


When I was little, learning to count, ‘I’ was represented by lots of numbers; two eyes, ten fingers, one nose and so on.  As an adult I recognize that 'I' am made up of thousands of numbers. While I believe that my whole is greater than the sum of my parts I do not discount the tremendous value in understanding and quantifying those parts. But, my ability to measure is limited by my ability to access my personal data in a usable form.

The Quantified Self is a movement to incorporate technology into data acquisition on aspects of a person's daily life in terms of inputs (e.g. food consumed, quality of surrounding air), states (e.g. mood, arousal, blood oxygen levels), and performance (mental and physical).  There are devices and tools available to help us measure just about everything we do.  Nike+ is a great example of how devices can be used individually and contributes collectively.  I joined up online out of curiosity and all of my runs are added to the online calculator that keeps a tally of the ‘Nike community’ steps, calories and Nikefuel (Nike's way of selling more devices).  Think of how informative it would be if individuals shared their health data in the same anonymous way.

This week I encountered John Wilbanks on TED talks John Wilbanks: Let's Pool Our Medical Data and online at the Strata Rx Conference – Data Makes a Difference John Wilbanks: Choose Your Monopolies Wisely, and I was inspired by his belief in pooling medical data.  He goes beyond self interest in accessing data and believes that our data should be pooled (anonymously) to help find answers to our health challenges.

Wilbanks believes our health is the interaction of our bodies, our genomes, our environment and our choices and we can access data on all of these components to help us make informed decisions and be partners in the future of our health.  For those familiar with population health and the determinants of health you will be encouraged by his inclusion of so many measurable factors that impact the health of each and every one of us.  You will be nodding your head in encouragement as you listen to Wilbanks because you too recognize that improvements in health and health systems will not be found by keeping data in silos, but by looking holistically at all the factors that influence health.  Accessing and sharing that information is the first step.

It’s your health.  It’s your health information.  Manage it well.

Sunday 14 October 2012

Gimme my DaM Data

The American College of Medical Informatimusicology (ACMImimi.org) is proud to present this collaboration with e-Patient Dave.

Rights & Responsibilities 101


There is a whole bunch of activity and innovation happening out there to connect people with their personal health information.  I applaud most of it.  Bring it on!  However, there seems to be a fundamental disconnect between the governments and industries promoting and producing products and the general population.  No one is taking the time to explain to people why they should care about controlling their personal health information.  

So, let’s talk about that.  Lets start with your rights. 

It is your legal right to have access to, and obtain copies of, your health information.  Legislation is in place in most developed countries, in Canada you can find the Personal Health Information Act (PHIA) on most provincial web sites, in the US there is HIPAA (Health Insurance Portability and Accountability Act), and so on.   The Acts are important but what you need to know is what they protect – YOUR health information.

Simply put, when you engage with a health care provider you provide them with information verbally, through various diagnostic tests, through lab tests and by passing along historical information related to your health.  Your health information legally belongs to you, the health care provider holds it in trust in order to diagnose, treat or maintain your health.  The health care provider stores your information in a file (electronic or paper) and that file belongs to the health care provider, but, the information in it belongs to you.  This applies to all health care providers, family doctors, specialists, dentists, optometrists, pharmacists etc.  

At any time, you have the right to ask for your health information and your health care provider is legally obligated to give it to you.  Until recently asking for your health information was an onerous task that netted few gains.  The most common request might be to your family doctor because you were relocating.  The request would result in a paper file being photocopied for an often hefty fee (usually in the hundreds of dollars) and would take months to process.  In the end you would come out with a stack of papers that were difficult to understand and that your new health care provider would not use. In the end you would have to repeat all your information and go through a new set of tests.

Fortunately, we now have many family doctors and health care providers working from electronic health files.  The transfer of your personal health information from their file to you should be simple, fast and inexpensive (I would argue free but that is a topic for another blog), so what is happening out there?  Never has anything so simple been made so complex.  Governments are struggling to understand how to protect your privacy and their liability in this new world of electronic health information.  Health Care professionals are concerned about losing control of your health care information (it would be so easy for you to get a second opinion if you had access to your information) and insurance companies are trying to figure out how to capitalize on you accessing your health information. 

So, while they are all wrestling with their cost benefit analyses and risk mitigation's you and I are no better off and we should be.  In this digital world there are endless opportunities for you and I to use our personal health information to better manage our health.  With our information we become valuable partners in our care decisions.  With our information we can be proactive and manage our health risks better.  With our health information we can connect with devices and programs that can help us improve our health. 

But we have to want it, we have to demand it and we have to understand that accessing and managing our personal health information is not only our legal right but also our personal responsibility.  No one is going to hand this over to us. 

We need to ask at every doctor visit and when we visit our community pharmacist or dentist.  

We need to care enough to be engaged with our health care providers on this issue.  

We need to take the time to learn about this and enter the discussion because I’m here to tell you, there are a whole lot of people out there talking about what to do with something that legally belongs to you and me,  our personal health information, and our voices need to be not just included, they need to be loud and strong.
 
It’s your health information.  It’s your health.  Manage it well.  

Monday 8 October 2012

Introducing the Fainting Goat



Let’s talk about personal health information and how putting people in control of their information can improve their health and the health of our healthcare system. 

After 25 years working in the Canadian healthcare system for a provincial health department as well as non-government health agencies and local health authorities, I have created this blog to hopefully fuel some discussion outside of ‘the system’. 

I believe that there are only two ways to fix our healthcare system; create efficiencies to save money (without compromising care); and mitigate the demand on the system – prevent people from getting sick in the first place.  We need both solutions to work in tandem and we all have a role to play.   Psst ….. In case you were not aware, there are some significant challenges with the Canadian healthcare system, and some would say, the system itself is on life support right now.  

So, what’s with the Fainting goat? If you haven’t heard of these rare, quirky, lovely animals there are a number of amusing videos online and there are even Fainting Goat blogs (this is not one of them) check them out on You Tube.  These goats have a congenital medical condition known as Myotonia congenita, the goat's muscles tense up when the animal is startled and don't immediately relax. It’s like experiencing a full-body charley horse, without the pain.   This unusual condition brings new meaning to the term ‘scapegoat’.  Fainting goats were bred as the ultimate fall-guy; they were put in fields with flocks of sheep and, if a predator attacked, the goat would faint, be eaten, and the sheep would escape. 

When I came across the fainting goats, they made me think of all the people out there dealing with unique health issues, congenital or acquired, acute or chronic and how they cope with their diagnosis.  The goats are survivors despite living with a condition that makes them incredibly vulnerable.  If you are fortunate enough to be completely healthy, congratulations, keep it up.  Chances are you or someone in your family deals with a health issue or there is a hereditary health problem lurking in your family history that occasionally crosses your mind. 

We can all relate in some way with the shock of a diagnosis, the panic to learn as much as you can about whatever insolent disease or disorder had the nerve to discount the condition of your health.  My fainting goat was a rare form of melanoma, diagnosed and treated over 10 years ago never to return (knocking on wood here – no this is not a blog about skin cancer).  The shock of receiving that diagnosis was a bit like the stunned paralysis the fainting goat experiences but, like the goat, I eventually bolted up and got to work. 


My experience emphasized how important my role is in managing my health and how big the information divide was between my doctors and me.  The internet helped me to bridge some of the information divide, add to that my connections from working in the system and having both a GP and oncologist in my family, you would think I would be an engaged partner in my care decisions. Despite all these advantages I was barely more than a passive participant in my care.  My research took hours of work every night, provided lots of background information and the opportunity to ‘chat’ with people dealing with a similar diagnosis but also sent me in lots of wrong directions.

How do we navigate a complicated healthcare system over our lifetime in a way that reduces our risks and maximizes our opportunities to live a long and healthy life?  I believe one of the solutions is to own and manage our personal health information.  Personal health records leverage technology to empower each individual to manage their health information in a way that enables them to improve and maintain good health.  It is about making everyone an active, informed partner in their health care. 

The evolution of personal health record technology is in its infancy with adoption rates advancing at different stages around the world. Canada is quite far behind most developed countries but sometimes that can work to our advantage.  I believe our approach to personal health records should be guided by the experiences of other nations by studying their successes, challenges and the relevance of their approach to Canadians.  I also strongly believe personal health records need to be developed to meet the needs of healthcare consumers not providers.

So this is my blog, my passion. It’s not about goats or cancer. Every week I intend to write about current advances in the adoption and evolution of PHRs around the world.  In between, I will be tweeting relevant articles and commentary on the subject @myfaintinggoat.  It’s an important discussion and I hope that you will join in and make your voice heard, share your experiences, your support or your skepticism. 

It’s your health information.  It’s your health.  Manage it well.