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Your Health Records: Are they really YOURS?

June 22nd, 2009
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Let me start with three stories illustrating why you might care about having access to and control over your personal health records:

  1. Fred lived in Florida. As he was elderly, he had a regular care provider that he saw for his health needs. As was customary, the health care providers maintained a file of records for each patient, including Fred.

    One day Fred went to see his family in New York. Fred woke up one morning and was feeling quite ill, so his family took him to the local hospital where Fred was admitted to the Emergency Room. Fred’s doctors in New York needed to have access to Fred’s prior medical history and medicines in order to provide proper diagnosis and care. However, when the New York doctors called the Florida doctors for copies of Fred’s records, they were denied access. The Florida provider’s office told the New York doctors that they would only share the records with the patient in person, and that if the patient was unable to fly back and get them, the Florida providers couldn’t help the New York doctors–even if all parties knew that Fred was in the emergency room.

  2. Keisha and Bob lived in a nice house. One day a natural disaster struck their neighborhood and devastated many of the houses, including Keisha and Bob’s. As natural disasters strike suddenly, Keisha was seriously harmed and was taken away to another county’s health care facility for treatment. Bob knew that Keisha was taking medicines for some condition, but Bob had been away recently and had not heard what Keisha’s condition was or the names of the medicines. Also, Bob knew that Keisha had just changed their health care provider but didn’t yet have an identification card for the new insurance plan. Bob could give permission for medical care, but did not have the proper information to assist his wife.

  3. George had been diagnosed with cancer of a mysterious kind. The first oncologist suggested that George undergo certain tests, which he did. The second oncologist interpreted the tests for George. A third doctor prescribed medicines. George’s cancer did not abate, and he was referred to a specialist at a different hospital. George got additional tests and additional medicines. However, because George was ill he did not remember that he was taking medicines prescribed by the other doctors, so George was over-medicating himself. That made George really sick. After some months of going round and round, George got so sick that he called 911 for an ambulance, which arrived to find George unconscious. The ambulance doctors had no way of knowing what might be wrong.

In each of these cases, accurate and informed care could be provided to the doctors if they could get access to existing medical records.

HeathDataRights.org is a site that can tell you more about this and why it’s important. Here’s their FAQ. The basic idea is this:

  1. Have the right to our own health data
  2. Have the right to know the source of each health data element
  3. 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
  4. Have the right to share our health data with others as we see fit

I endorse these rights. I hope you will join me in talking about this important matter.

Coaching moment: You are represented in many ways. For example, there are several databases that include information about you, including databases maintained by your bank, your employer, and your health care provider(s). The medical records that pertain to doctor’s appointments, past surgeries, current medicines and allergies, and other forms of health care could save your life.

If something happens to you and your medical care providers can’t get access to your data, what would you do? What would you like to see happen? Is this information about you really yours?

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future, history, records

  1. coach
    June 23rd, 2009 at 16:22 | #1
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    Esther Dyson wrote an article, Release 0.9: HealthDataRights Beta Version, that helps give this matter a little more context.

  2. lori
    July 6th, 2009 at 20:41 | #2
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    This is so unbelievably true; in an era in which we have instant access to any assortment of media, we have limited to no access to our own medical records. Most of the time the reason behind it is announced as “privacy” but it’s interesting that it’s our data and yet, without a lot of wrangling, we cannot see it.

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