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.