This is the last of a series of two articles, based on interviews with Regina Holliday, on patient access to health information. Patient access to their health information was a hot topic at HIMSS15 and an issue that will continue to evolve along with health IT.
While in Chicago, I was fortunate to meet Regina Holliday, patient advocate, speaker, author of a new memoir, and artist. Last week, during an interview that felt very much like two friends sharing stories over cups of tea on a cold morning, I told Regina of my own experience as a patient with data.
Regina Holliday, painting at HIMSS15; Photo by nuviun
Shortly after my trip to HIMSS15, I had a planned surgical procedure. The state-of-the-art medical facility in which I receive my care has a policy of releasing all patient data, from lab results, to radiology reports, to doctor’s notes after seven days.
It’s a blanket policy. There’s no review of the data, no caregiver wondering what frame of mind a patient might be in upon receiving said data, and no one asking if the data is in a readable or useable form.
The institution had good intentions. I have the data (which is mine, anyway) in case I develop complications and need to be seen in a different facility down the road.
But, in this post-op scene, queue me, recovering from major surgery and on a heap of medications, reading in great detail about the organ that had been removed. I still hadn’t fully come to terms with it as gone, and yet, there I was, reading someone else’s exploration of it. By myself, with no caregiver to hold my hand or explain the jargon.
Holliday reminded me that patient access to health information is important for patient safety.
"Many times,” Holliday told me, “those reports never get read by your primary care provider. They are proof that the procedure happened. Oftentimes, couched within that document are really important things for you to know. It’s great if there’s nothing found that’s untoward, but that’s not always the case.”
Whether or not patients are able to understand the data is not really the point—or not the whole point—of giving them access to their data. Yes, committees could be formed to discern which data to share, and, according to Holliday, many institutions wanted to stop sharing health information with patients until physicians or other caregivers had time to discuss it more fully.
But patient safety is a concern for patient advocates. That they are able to abide by the instructions of their caregivers; take their medications as prescribed; take daily walks, etc. Many times, patients may not remember the instructions of their health care providers. Other times, they might wonder how an over-the-counter vitamin supplement would interact with a prescription, but not remember the exact name or dosage of the medication. In these cases, and many others, data access is about patient safety and compliance.
If you build it, they might come
My case is a bit different though, as I tend to be a stubborn, yet compliant patient. For me, Holliday kindly nudged, it was more a matter of giving patients the data, and allowing them to ask about it.
My rather out-of-body experience of reading about someone dissecting one of my organs was in fact an opportunity for true patient engagement. It gave me the impetus to call my physician’s office and ask some important questions about my health and what I should do to sustain it.
We’re not there yet
While many US institutions now give patients access to their health information through patient portals, for Holliday and other patient advocates, we’re not finished yet.
Where do we go from here?
Patient portals are evolving quickly, according to Holliday, “they can almost talk to you.”
As Holliday and I discussed the future of the patient data movement, I was reminded of my pre-teen daughter who still has a lot to learn from adults even though she might think otherwise. Holliday told me:
We still have a lot to learn—and it’s scary for institutions because their profit margins are siloed in how we de-identify and sell the data.
Other industries have been through complete overhauls and, though perhaps leaner, are learning to do business in new, sometimes more consumer-centric ways. US banks, insurance companies, and automobile manufacturers may have lessons to teach those of us in healthcare about data, security, making our way in new regulatory environments, and surviving difficult economic times.
For more about how I see healthcare coming out of this time of change, you can read my previously published article, "There's No Place Like HIMSS."
This blog is intended to contribute to discussion and stimulate debate on important issues in global digital health. The views are solely those of the author.