Patient empowerment

Three true stories: When patients improve care by sharing their images

illustration doctor and patient viewing chest xray

About the Author: “e-Patient Dave” deBronkart is PocketHealth’s Chief Patient Officer. A survivor of a near-fatal cancer by being highly engaged in his care, he’s now a global evangelist for patient engagement in health data as a path to better achieving healthcare’s potential. Here he shares three stories of people he knows personally, who have helped improve care by being actively involved in sharing radiology data.

A new age has been dawning for a decade: an age in which patients help improve care by coordinating all their data, so clinicians don’t have to. For text and numbers, it’s OpenNotes. PocketHealth is extending it to radiology.

It’s new, and it’s important. Most health data systems – including radiology – are designed to hold data, and they do that well. But they’re not always designed to make sharing easy. PocketHealth can help – without complicating the clinician’s life.

Patient access really does change what’s possible, and I know it directly. Here are three true stories from people I know. They range from a top-tier senior MD to a non-techie daughter of a personal friend. Listen carefully.

Story 1: Peter Frishauf, 2010

Peter Frishauf

I first met Peter Frishauf MD in the earliest days of my evangelism, when a bunch of us were founding the Society for Participatory Medicine (SPM) in 2009: he authored two important articles in the inaugural issue of our Journal of Participatory Medicine. SPM is about patient-clinician partnership, and Frishauf is a true pioneer in the field: he’s the founder of Medscape, the legendary medical news website that is today headed by Dr. Eric Topol and a firm believer (as is Topol) in patients being fully engaged – and informed – about their care. (See his “25th birthday” post to them in May.)

Not surprisingly, as a patient himself, Frishauf believes in the importance of having patient information (including his own) at the point of need, and he has personally experienced what a difference it makes. Case in point:

Ten years ago in a crisis (symptoms indicated a possible stroke), his doctor was having trouble getting at a scan, even though it was stored in the hospital where they were both standing. But Frishauf – a pioneering empowered patient – had his images stored in an app, so they were both able to view them and make a quick decision.

See him tell the story in his 2012 speech about it.

Story 2: W.D., 2020

“W” is a professional colleague – somebody I know through volunteer work in the FHIR standard for health data sharing, which is now Federal policy in the US. It’s funny how many people in that field got into it because they personally experienced how important it can be to have such information.

Earlier this year, a hospital worker visited W’s home late one evening to assess a family member during a crisis. Looking at the current symptoms, the worker asked if the hospital had done a particular scan. “W” didn’t have the scan itself but she did have the radiology report, and was able to answer. An important decision was made immediately on how to address the crisis, without delay … because the family had the information, even though the clinician didn’t, at that moment. Isn’t that great?? The clinician didn’t even walk away with a to-do for herself or her colleagues.

Story 3: N.S., 2020

“N” is the daughter of a high school friend of mine. She lives in Singapore. This winter an emergency developed, requiring urgent brain surgery, involving lots of image exchange under high pressure, to assess the case. (Imagine how my friend felt – how you’d feel – with a daughter on the other side of the world facing this challenge.)

Fortunately “N” had previously lived in Toronto, where her previous scan at North York General was stored in the PocketHealth cloud. Using that account she was able to upload additional CDs and cloud-share with distant doctors. After the surgery at Mayo Clinic was successfully completed, she summed it up: “I’ve been able to share my scans with several neurologists in Singapore and then seek second opinions in three countries.” From home.

It warms my heart, personally, to know that this work I’ve gotten into could have such a wonderful effect, helping a dear friend from long ago in a crisis of unspeakable worry. Cloud technology can really be a wonderful thing.

Let patients help – with PocketHealth

We’re in a new age of patient-clinician partnership – participatory medicine – enabled by new technology. In none of these cases did the patient or family replace physicians or radiologists; they simply helped make information available at the point of need, in the moment of need.

With all the burdens health professionals face today, it just makes sense to let patients help healthcare achieve its potential.

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