With my clinical informatics hat on, I spend my time working with physicians, nurses, and other healthcare professionals trying to get the best results from advanced technology for patients and those who care for them. This often entails configuring order sets, documentation templates, and clinical decision support tools, all while trying to find the sweet spot between onerous clicks and meaningful assistance for clinicians. While the work is gratifying and important, sometimes it becomes easy to forget why we’re doing it in the first place: it’s all about the patients.
Patients and their care must always be central to our mission in the healthcare information technology (IT) space. While this seems obvious, it can get lost after countless meetings with operations folks, compliance and regulatory experts, and billing specialists. We concentrate on usability for the clinicians, accountability for our medical coders, and clarity for our health information management colleagues. But ultimately, everything we do is centered around patient care.
I recently attended an all-hands IT meeting at a hospital client with which I’m working. After the chief information officer gave a short update on the state of their IT deployments and the current size and makeup of their staff, he ceded the virtual stage to a patient, or rather since this is a children’s hospital, the parent of a patient. While I’ve worked with clients who ask patients or folks from the community to sit on various committees and represent the patient perspective, this was something different. This was a parent who was on a mission!
This mother spent 15 minutes detailing the long and winding course of her child’s healthcare journey. She went into specific details about how the child was diagnosed, how the diagnosis affected the entire family, and what ultimately saved the child’s life. The care involved hospitals and healthcare systems in three states. Even though I’m an experienced pediatrician and a parent of four, I learned a lot from this woman. For example, she detailed how she had to carry voluminous folders of paper progress notes, operative notes, lab and imaging results, and expert opinions about the best course of action. If she didn’t have the paperwork with her when she needed it, care delays might occur.
This need for on-the-spot information resonated with me. When I was the chief medical information officer of a hospital system, I attended a conference where I heard Neal Patterson (founder and then chief executive officer of Cerner) speak. He made the same points as I outlined above: his wife was going through cancer treatment, and he – the CEO of a major international electronic health record (EHR) vendor – had to carry two suitcases of paper test results and paper progress notes from specialist visit to specialist visit. He railed against the state of electronic information sharing and vowed that his company was working hard to fix the problem.
Having patients directly speak to IT professionals helps center and focus us. While we’re all patients sometime, most of us don’t face life-and-death battles that require heroic healthcare treatments. Hence, while we can rationally understand what’s involved in seeing personal physicians spread out over many cities and states, hearing firsthand about the trials and tribulations is essential.
From my IT meeting with a parent participant, I learned that:
- The patient portal plays an even more essential role in care coordination than I could possibly understand. Having the lab results, vital signs, and visit date information available immediately when a doctor or nurse asks is priceless in terms of time-savings and staying on point. It’s a huge improvement in many ways from the days of paper.
- We need to do a better job in terms of opening up appointments earlier. The mom relayed to us that she often is told to come back and see a given specialist in six months but can’t make the appointment because the schedule isn’t available that far ahead. While she requested a software improvement to send her a message when the schedule opens up, I took this as a problem with our schedules, not an enhancement need for our EHR.
- Sharing all our notes with our patients (and their parents when appropriate) can save lives, decrease unnecessary care, and vastly improve quality. The time for OpenNotes is now, and the fact that the government is requiring it is superfluous. We must share patient data with patients and push aside the paternalistic attitudes we’ve had in the past.
While I’ve always appreciated the outside or external patient perspective, my experience a few weeks ago cemented in my mind the tremendous benefits of bringing patients (and their parents) into the administrative side of the hospital, clinic, and health system. We need more of this! Let’s do it.