Monday, February 8, 2010

How Much Information Should Patients See? All of it

One of the provisions of the HITECH Act and the regulations that have been either created or proposed as a result of it is that patients should be given copies of their health information, including problems, medications and allergies, but also discharge summaries, instructions and procedures. This seems to be a cause for concern on some fronts. See these two posts for example:
As a patient and an advocate for other patients, I want to see what another healthcare provider sees.  I don't want a restricted view into my own health records or those of other patients whose care I'm responsible for.  I know enough to ask questions when I don't know what something means.  I also want the ability to ask those questions of any healthcare provider or other information source available to me.

Ideally, giving patients copies of their medical records will be the start of a dialog between them and their doctors.  By initiating this dialogue, providers will wind up with more educated and involved patients.  I understand how "raw reports" could cause a great deal of patient concern, especially "abnormal flags" on a lab report. This too will need to be managed, just like any other change in our healthcare system.  If you want to do a good job, make sure that the way you convey that information is simple and easy to read. It will not only benefit patients, but it will also benefit other providers who are reading my medical records subsequently. But it shouldn't be used as an excuse to delay action on exchanging information with patients, or push back timelines current regulations or plans.

I have one comment to make with regard to the definition of a medical record:  Any healthcare provider should already have defined for themselves what they consider to be the patient's legal medical record.  This is the record that they are responsible for maintaining for their practice.  The same definition should be used to define the medical record that the patient has access to.

All too often I've been involved in situations where trying to access my own record, or that of someone whose care I'm responsible for involves a great deal of effort, delays, and use of personal time on my part.  If you want my help, make it easy for me to get access to the information I need, and give me all of it.


  1. I could not agree more. See some of my writing at (like
    Lodewijk Bos
    president ICMCC

  2. The point about abnormal flags is likely a much bigger problem. It brings in the discussion around the Intellectual Property of the Provider. It brings in the CDS rules that might have been in effect at the time. It brings in the code-sets that might have been in effect. Ut brings in the software algorithms in effect. It brings in the contractual language with third parties used for lab results and such. Essentially this will bring into view far more than what is today classified as the 'legal medical record'. Therefore your statement about taking the time upfront to define what the 'medical record that the patient has access to' is even more important to think through and make statements about.

  3. "The same definition should be used to define the medical record that the patient has access to." Well said!