It’s scary and emotionally painful to be 500 miles away from your dad when he gets admitted to the ICU in the middle of the night. I learned that some of that fright can be alleviated and the pain can be eased a bit by online access to his health data.

With consent, I was able to access to the Boston hospital’s patient portal, one that was developed many years ago, long before most providers understood the potential power of patient-facing health IT. My dad got the medical care he needed and when he was released from the hospital, with his consent, I also got secure access to the discharge summary and instructions in an electronic file (standardized format—CCD or continuity of care document ) that I could open in a browser in a human-readable format.

I learned many things in a very personal way from this experience. There’s no substitute for timely, accurate information when you’re trying to help out family from afar. I could track key markers of clinical status to understand how my dad’s recovery was progressing. Reviewing the data in real time allowed me to piece together clinical data to know what questions to discuss with his doctors. I felt empowered by the data.

Specifically, I could view lab data, both his active and inactive medications, the radiology reports (for X-rays but not other scans), the cardiology reports and ECGs themselves, and the blood cultures. In addition, getting a summary of the entire stay on the day of discharge was very useful (even if it was not yet quite complete—I understood that some additional data may be returned to clinicians a few days later).

That’s not to say that it was a completely user-friendly experience, so I have offered the hospital’s IT team my own personal thoughts on opportunities for improvement. Most importantly, there were very few links to lay content for contextualization (just a few of the labs had links and the content at those links was mediocre). I was able to make sense of all of it with help from internists I work with, but a significant portion of data would otherwise have been difficult for me to understand.

That’s absolutely NOT a reason to close off access to the patient/family (I’m clearly much better able to move forward with the raw data than no data and nobody’s forcing me or anyone else to look at it). Rather, there is infrastructure that can be built to support better understanding. Data can be linked to consumer content so that context is provided for every data element. This can be done via the HL7 Infobutton standard or an XML web services platform (for example, open-source software will soon be available from the National Library of Medicine—MedlinePlus Connect—and several other content vendors already provide similar solutions). This should be done both for the online portal and the CCD/discharge summary. In addition, Kaiser Permanente recently donated to HHS its Convergent Medical Terminology that facilitates the translation of clinical terms into consumer-friendly language.

Some data were not made available to us, such as CT scan results. Although there is a document explaining exclusions from the patient-facing portal that the hospital makes available upon request (for detail, see JAMIA article on the topic ), it would be much easier if data produced on that patient but not available to patient/family was stated explicitly on each page what is not there. Without noting in the portal what diagnostic tests were performed but not reported left me wondering if critical tests were carried out and what important information the clinicians may be missing in diagnosing the case.

It’s also not clear why or how certain data are excluded. As I noted, some of the lab data were mysterious numbers upon first examination. The explanation that time is necessary for clinicians to communicate with patient/family doesn’t hold up if the patient/family is left in the dark (that is, if information is not CLEARLY communicated to the patient in some other way, which is expecting a lot more of the clinicians than is probably reasonable).

The most glaring omission was progress notes, which would have been very useful. Progress notes would seemingly be among the easier information for lay people to understand. This health system is participating in a pilot project in the outpatient setting. Pending results from the “Open Notes Project,” the hospital likely will be making those notes available for hospitalized patients and families as well.

Another functionality that the portal has available for outpatients that would have been incredibly valuable for me is secure messaging. There was no opportunity for electronic communication with the ICU or medical unit care team. Phone communication is very hard for care teams in the ICU and on the floor, so having an opportunity to exchange secure email with them would be much more convenient for them and for family members than relying solely on telephone tag.

Those areas for improvement notwithstanding, there’s no doubt that this portal is absolutely transformative from a patient/caregiver perspective. It was incredibly valuable in helping me to understand what’s going on with my dad. Now that I’ve had this experience, it would be absolutely maddening and emotionally painful if I had to go through this again without access to data. I hope that meaningful use of EHRs helps to make this kind of portal the rule rather than the exception.

Joshua J. Seidman, PhD
Director, Meaningful Use