There are a million stories in the naked city when it comes to personal health information…many of which end up very badly.
At the very point in our lives when when we’re fighting for our life, or for the life or ‘good death’ of our loved one, we too-often find ourselves also fighting to access our health data. This absurd, appalling scenario steals a basic right away from health citizens: our ability to fully participate in our own health decisions and care.
A Declaration of Health Data Rights has been launched on four simple, elegant, personal precepts: that We the People…
- Have the right to our own health data.
- Have the right to know the source of each health data element.
- Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form.
- Have the right to share our health data with others as we see fit.
This effort came about through a convergence of events, writings, and social network interactions — all driven by the context of the erosion of personal health data rights and access, and growing personal health crises. As the Health Data Rights’ FAQ states, “The Internet, social networking, and most lately the agenda for change put forth by President Obama’s Administration has brought the power of the idea to a meme that is much bigger than any individual’s contribution.”
Health Populi’s Hot Points: Without immediate, full access to our personal health information, we cannot realize our full health potential…or manage end-of-life decisions with the fullest grace and dignity which is the right of every health citizen.
Please visit the healthdatarights.org website and read the FAQ. If you are so inclined, endorse the Declaration. Think about your family, your friends, your self.
My homeboy Benjamin Franklin wrote, “In this world nothing can be said to be certain, except death and taxes.”
After Taxes but before Death, the great equalizing certainty in life is that we will all find ourselves at a moment-of-truth confronting a diagnosis of cancer or HIV or Parkinson’s or heart failure or other threat to our life or health. Whether you will have access to all of your health information to Get Smart Fast is not so certain.