The Energy for Outrage

I don’t often have the energy for outrage. I balance a slate of autoimmune conditions, a full-time job, this blog, and an active personal life. It usually takes more than the energy I have on any given day. There’s never a lot left over.

But I went to a conference last week, Health Datapalooza, and one story reached down and dredged all of my outrage reserves.

There had been considerable discussion around data transparency, especially regarding patient records. Patient records are the paper or electronic notes taken by each provider you see: doctors or hospitals, nurse practitioners, physicians’ assistants, nutritionists, physical therapists, psychologists, anyone in your medical life. There are test results, medication lists, condition status notes taken during the appointment, instructions to the patient, and other highly personal information.

These records can be vital to tracking the patterns of your condition, and may be necessary foundation if you begin a course of treatment with another provider or seek a second opinion. With access, you can also make sure that the official records of your condition are accurate. I didn’t realize that, until recently, those records were not considered property of the patient, but rather the provider.

I have not been in a situation that required my medical records. When I was a kid, I had a few doctors who were less than competent, but the medical bench where I lived wasn't deep enough to offer the expertise for a second opinion. Now, I am so particular about my providers, I haven't needed one. Besides, my doctors now either send me their notes after each visit, or give me access through a patient portal. The closest I’ve come to wanting my records is a sort of nostalgic desire to see the records from when I was in a wheelchair. (Back then, I wanted no evidence that it had ever happened.). But most hospitals and practices do not hang on to medical records for 30+ years.

I had heard some discussion about records transparency – liberating your data -- throughout the conference, and in a Friday morning breakout session about integrating patient voices in data, the problem was brought down to a personal level. During the Q & A session at the end, a woman talked about her daughter’s rare condition. In the universe of rare diseases, it is even rarer to find local physicians who have the necessary experience to diagnose, let alone properly treat the patient’s condition. Often, patients bounce from doctor to doctor to doctor, looking for answers and relief. Each doctor has a separate set of notes.

The woman described the situation of one family with a similarly diagnosed child. They were seeking their child’s complete medical records from a hospital so they could provide them to another specialist. The hospital said they would be happy to provide the records, for about $1,000. The fee was for administrative costs, they said. How many people dealing with chronic conditions do you know that have a spare grand for something like that? Probably no one, and the lack of access or a delay could mean the difference between life and death. At the very least, it could affect the patient’s (and the family’s) quality of life.

I was outraged. I understand that there is a cost for the staff to make copies, but where is the sympathy, the understanding of possible consequences to the denial of access? These people are medical professionals. Was there no way to send the records immediately, and work out the details afterward? The sad truth is that if a doctor’s office were to make the request, there would be no issue. There is an understanding of reciprocity in many cases. But because it was the patient making the request, it was a ”service.”

The group ended up receiving a grant through the Patient-Centered Outcomes Research Institute (PCORI) to hire an investigator. The investigator, who had the time to harass the doctors’ offices for the patient records, was successful.

Luckily, there is a push to change this situation. The history of the issue is long. One of the most pivotal events came in 1996, when the Health Insurance Portability and Accountability Act (HIPAA) gave us the right to see and receive copies of our medical records. We can review them with our doctors, check for accuracy, and have more in-depth discussions about where our conditions stand and where to go from there. Since then, slow but steady progress has been made toward open access. According to OpenNotes, an organization working toward unlimited patient access to their records, 12 million patients across 20 hospital systems can now view their medical visit records. This number continues to grow daily.

If you would like to find out how to access your own records, please visit some of the resources below:

Blue Button: