e-Patient’s Health Record. Which DAM data?

Paint me frustrated. In the forums I attend the conversation is almost never about what e-Patients need in their health record. Rather it’s about what the vendor and government communities feel is possible given the current state. Many studies exist about adoption of the Personal Health Record (PHR), but none of them address the usefulness of the data to us as e-Patients. The federal government has initiatives that could increase access to health information by e-Patients. A big step forward. The Automate Blue Button Initiative (ABBI) seeks to facilitate the exchange of health information. But again it’s out of its scope to consider data elements that aren’t already mandated by Meaningful Use. There is also a federal health design challengeBeing able to access your health information on demand can be lifesaving in an emergency situation, can help prevent medication errors, and can improve care coordination so everyone who is caring for you is on the same page. However, too often health information is presented in an unwieldy and unintelligible way that makes it hard for patients, their caregivers, and their physicians to use. There is an opportunity for talented designers to reshape the way health records are presented to create a better patient experience. The challenge has similar limitations as the ABBI. When I asked they said, “The focus of this challenge is to create a design that uses all the fields and sections that exist in Electronic Medical Record (EMR) systems today. The fields we listed come from the CCDA, a standard that all EMRs are building towards.”
Note: The CCDA (Consolidated Clinical Document Architecture) is a patient summary containing a core data set of the most relevant administrative, demographic, and clinical information facts about a patient’s health care, covering one or more healthcare encounters. It provides a means for one healthcare practitioner, system, or setting to aggregate all of the pertinent data about a patient and forward it to another practitioner, system, or setting to support the continuity of care. Its primary use is to provide a snapshot in time containing the pertinent clinical, demographic, and administrative data for a specific patient.
Mind you, this conversation is a huge step forward, but I am unable to engage in a conversation in these forums about what we e-Patients need in our electronic health records?
I have presented the following two scenarios and data sets that I first tried out here a month ago in Give Me My Damn Data:

1) Coordinating care – All of my health team has the same information to share amongst each other – primary care to specialist, specialist to specialist, specialist to primary care, and all to my lay care team (relevant history, allergies, medications, procedures, diagnostic study results, impressions, diagnoses, unresolved dilemmasnext steps).

2) Unexpected care – The information is readily accessible to whoever takes care of me in an unexpected situation when I can’t fully communicate for myself, like an Emergency Department. (Current medications and medications that didn’t work, allergies, doctors, procedures, relevant history, recent diagnostics studies, ability to communicate, ability to learn, caregivers, typical reaction to pain and the unknown, what works to relieve pain, inform, and calm me, and cultural and spiritual needs).

Seldom do the underlined items exist in even the best EMRs, never are they retrievable by me or my health care team. This isn’t good enough.

Help me present more clearly by sharing your thoughts in the comments to this post:

1) the scenarios in your experience where medical record content was critical to care 

2) the data set (information) the record should contain in those scenarios.

 Today the question is what. Next will be how – How do we move the industry to put all the information e-Patients need in the health record?

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