Wednesday, September 28, 2016

Sign and Circulate Jamie Heywood’s Declaration of Health Data Rights Petition Today

September 26, 2009 by  
Filed under HealthCare

Declaration of Health Data Rights petitionWired Magazine is running a great article about Jamie Heywood, co-founder of PatientsLikeMe, and his quest to make personal medical records electronic and easily accessible online.

Heywood is behind HealthDataRights.org, a movement to declare our individual right to have and share our health data. Heywood has started the Declaration of Health Data Rights petition and supporters can publicly endorse it by going to HealthDataRights .org. Essentially by having access to all the health data about ourselves in a timely (key word!!) manner we can make better health decisions and save lives.

I am one person who would happily share all of our medical records like Heywood proposes.  I have been looking into a way to try and opt-out of the Hippa law Privacy Rule requirements.  I am not interested in keeping our medical records private. In fact, I want people all over the world to access our medical records in the hopes that someone can help save the lives of our twin daughters who suffer from a fatal cholesterol disease.  In some cases my doctor’s can’t talk to each other unless I give written permission.

I am asking everyone I know to endorse the Health Data Rights petition today. Our family has literally spend hours collecting Addi and Cassi’s medical records from hospitals including Lucille Packard Children’s Hospital at Stanford, Mayo Clinic, Children’s Hospital Michigan, Children’s Hospital Oakland, National Institutes of Health and Renown Children’s Hospital.

You can see the picture of the 3 inch binders I have created that contain the most important medical information on Addi and Cassi (we have two each so far). The orginal stack of paper was two feet tall!  To get all of our data to doctors at various hospitals throughout the country, I have sent hard copies of the binders to them. If they requested the records themselves, they would have to sift through the two foot stack.  Do the top doctors in the world have time to do this?

Currently, we are six months behind in gathering all of the new records – it’s a constant battle as we try and keep up and request the records for two sick kids.  There is no reason why medical records could not be in electronic form and available to anyone at a click of a button to share and easily SEARCH.

At one point, we were going to scan all of Addi and Cassi’s medical records and put them online allowing any doctor or researcher in the world to access them.  We figured out quickly that it’s simply too time consuming to tackle and manage. When you’re trying to save your kids lives you don’t have time to send Hippa release forms to hospitals and weed through fax cover sheets and garbage that hospitals often send by mail. If someone is chronically sick and dying, trying to collect all personal medical records is virtually impossible.

As a society, we are living in fear of the health and life insurance companies and the issues surrounding pre-existing conditions. We need additional legislation with health and life insurance companies to make sharing electronic medical records a reality. We would probably save billions of dollars in productivity time as well.

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Comments

16 Responses to “Sign and Circulate Jamie Heywood’s Declaration of Health Data Rights Petition Today”
  1. Frances says:

    I’m not that much off a internet reader to bbe
    honst but you blog really nice, keep it up!
    I’ll go ahead and bookmark your website to comke back
    later on. Cheers

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    Sign and Circulate Jamie Heywood’s Declaration of Health Data Rights Petition Today | The Addi and Cassi Fund – Niemann Pick Type C…

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