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.  

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.

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.  

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.