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Posts Tagged ‘personal medical records’

Mapping the New Frontier

June 28th, 2009
3 comments

Personal Data EcosystemThis picture, and the accompanying post The Personal Data Ecosystem, describes a flow of data from and about us. (Click on the picture for a larger, more readable version on Flickr.)

This rather detailed article talks about the need for a Personal Data Store, a database of a sort, in which you could “source, gather, manage, enhance and selectively disclose data” that supports your needs. More importantly, this data store is something that YOU would control. This is significant because it inverts the power structure for data (right now everything is in the hands of the collector organizations), and makes your personal data more valuable by being more accurate, targeted to your needs, and freely exchanged for a specific purpose. The authors point out the desirability of this new paradigm: “if a new source emerges that is richer, deeper, more accurate, less toxic – and all at lower cost than existing sources; then organisations will use this source.” Note that the organizations will no longer need to maintain and update their databases at the same level that they do now.

Coaching moment: Many people don’t think twice about giving their name, address, phone number, and email address, to strangers if it means they might win a prize or gain some free advantage. Getting something for nothing has a strong pull. Their data has no inherent value to them. We’ve been trained well by the advertising and other industries that we are lacking, or that we are nothing without their products or services. On some level, we believe this.

It’s a lie.

Our value is in our uniqueness. We see and experience things in ways that are different from everyone else. Our perspectives on life, our needs to interact with others, our personal wishes and desires are part of who we are. The essence of what we think of as “good,” “moral,” or “right” is what we might contribute to making the world a better place.

Yes, we have things in common: the need to be loved, to eat and have shelter. Look beyond our necessities. If you could find others in the world that lifted you up and made you feel special, and you did the same for them, wouldn’t you want this? Can you think of any likely path that might happen with the current state of data ownership?

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Your Health Records: Are they really YOURS?

June 22nd, 2009
2 comments

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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