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Imagine sitting in a car, eager to get someplace, but not allowed to drive. You must wait for another adult to come with the keys. You hit redial on your mobile phone repeatedly trying to get an update on when they might come. You’re not sure when or if they will arrive. It’s exasperating.

When it comes to health, having our health data is like having keys to the car: we move from being passive passengers to being drivers of our health (and of our healthcare system). Instead of waiting for data that might never come (and more than 7 percent of abnormal test results fall through the cracks, according to a study released today in the Archives of Internal Medicine), we can get the results ourselves. Whether we use this power to track our family’s medications, BMIs, lead levels, vaccines, or allergies, by being more actively engaged I believe we can make better health choices, reduce costs, reduce errors, and enjoy better health. We can steer toward where we want to go.

Oddly enough, I had never considered this until I read it today at Dr. Greene’s blog. I know how frustrating it was trying to get our daughters’ medical records, but it just seemed like that was the undeniable reality of how things worked and we gritted our teeth without asking questions. Now, the proverbial light bulb clicked on and it seems glaringly obvious that easy access is the way things should be.

Dr. Greene went on to announce:

Thought leaders across healthcare are collaborating to launch HealthDataRights.org and unveil a shared statement to ensure patients’ rights to access and share their own health information.

The site, designed to give people a voice in preserving their right to take responsibility for their own information and care, features a Declaration of Health Data Rights that reads as follows:

In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. 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

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

It seems like a real no-brainer to have freedom of access and control over our own health records. I don’t know why this hasn’t been in place for decades. Hopefully this is the beginning of a whole new phase in health care where we not only have access to our records, but we can also partake in developing a more comprehensive health history so our doctors know how to best serve us in regards to prevention and treatment.

This is where I go off into what may be completely unrealistic, but I think it’s the natural extension of Health Data Rights. So…

Imagine if your health records (and those of your children) were on-line (secured, of course) and you could access them anytime from anywhere. Information would be locked in, so you couldn’t alter what a health professional had entered, but you would have the freedom to enter more details about your existence than you’re ever given a chance to in a doctor’s office (if you can even remember at the moment).

Say you visit the neighborhood park with your toddler and as you’re leaving you notice a sign that says it’s been sprayed recently with pesticides. If there aren’t any immediate symptoms, there’s no reason to visit the doctor, but you could still open your child’s file and enter this exposure for future reference.

You could also answer much more detailed lifestyle questionnaires than anyone has time for in a doctor’s office. Questions about eating habits or typical use of personal care products and cleaners and pesticides could all be answered at your leisure, and would generate a much more descriptive picture of your life and the potential risks you may face.

Not only would this type of information serve you personally, but if it was then anonymously churned into a massive database, health trends linked to lifestyle and environmental exposures would become clearer so much quicker.

Yes, it could easily become addictive for a hypochondriac, so there may need to be some limitations, but I’m still dreaming. In the meantime, I’m excited about the possibilities of Health Data Rights. You should be, too, so endorse them today.

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