Danny van Leeuwen, Opa MPH RN CPHQ is a patient (Multiple Sclerosis), a caregiver, a nurse, and a leader. A version of this piece originally appeared on his blog, Health Hats.

What do we e-Patients need in our electronic health records? Help by sharing in the comments:

1) The scenarios where medical record content was critical to care.
2) The data set (information) the record should contain in those scenarios.

For example, a month ago I blogged about my health record, Give Me My Damn Data. I proposed the following two scenarios and data sets:

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 dilemmas, next 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.

Background:

Paint me frustrated. In the forums I attend the conversation is almost never about what the e-Patient needs, rather it’s about what the vendor and government communities feel is possible given the current state.

Many studies exist about adoption of the 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 challenge.

Being 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 EMR system today. The fields we listed come from the Consolidated Clinical Document Architecture, a standard that all EMRs are building towards.”

This isn’t good enough. 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?