On Truly Advancing Healthcare IT
Medicine, and the human body, is absolutely fascinating. And wonderfully complicated. Shouldn’t something as mission critical (truly life and death!) as medicine be one of the most advanced areas for technology to flex its rapidly-growing muscles? Maybe it is, in certain areas, drug research, imaging, perhaps. But for electronic medical records, patient data, and leveraging data to improve healthcare, we are barely scratching the surface.
This isn’t from lack of effort. My years with a leading healthcare IT vendor, and then with a large US healthcare IDN, showed me first hand (often painfully!) how many clinicians are surprisingly resistant to leveraging technology.
Numerous physicians have said to me, “I didn’t go to medical school to be secretary” or “that computer isn’t going to replace my brain!” There are lots of reasons for this that are subject of other blogs and books. But the most basic reason is simply that our doctors weren’t trained to leverage computers. Thankfully, we have a new generation of clinicians joining the industry who grew up with computers, know how to type, and are better poised to see value in leveraging technology.
This is an opportune time. Most hospitals and clinics in the US have largely retired the paper charts. Thanks to Meaningful Use, most of them also offer some sort of patient portal. Yet look at a typical patient experience right now.
It’s still too common to show up at a new clinic, maybe a specialist office, dietician, or supplementary care provider, and you get the dreaded clipboard. Hand write, once again, demographics, consent to treat, insurance information, medications, allergies, and other clinical information. This information is then either abstracted into the EMR by a medical assistant, nurse, physician, scribe, etc., or scanned (to a purgatory of rarely viewed images).
As patients, we hope that correct, and sufficient information is being shared appropriately, but the reality is, those informed patients are unsure at best about what is being shared and who is seeing our information. Uninformed patients are often blissfully ignorant about what their EMR contains and what has been shared, often assuming the information is flowing completely.
We sign HIPAA forms in the emergency department, because, well, we have to if we want to get care. We sign consent forms for our insurance companies to get our information, because, well, we have to if we want coverage for our healthcare costs. We sign click-through agreements for online fitness apps. We sign consent forms for transfers of care when we move, but we don’t know if, or what, is sent in many cases.
If we need to get care on vacation, we may want our information shared but not have a great way to share it. We can try to share information from our primary care office, but what about the hospital records, and specialty care? We try to remember all of our information during times of emergencies, when our memories may not be at their best. Or maybe we are being treated when we can’t talk well, and we simply can’t share details of our history, allergies, and medications.
Currently, I live outside of the US, but have had the majority of my care in the US. There is really no efficient nor comprehensive way to get my information shared electronically to transfer records here. I’ve been treated by a dozen PCPs over the years as I’ve moved to different states and countries, or because my insurance or associated network affiliations changed.
My family members and I have been hospitalized in several hospitals, all using different EMR systems. We’ve tried to assemble comprehensive paper records (!). The medical file weighs ten pounds, it not very user friendly–and forget about leveraging that data for interaction checking or decision support!
Medical information sharing is a problem that has not yet solved. Even Congress was involved, with investigations and fears about vendors actually blocking sharing of data. Vendors aren’t blocking data, and there have been many attempted sharing solutions over the years with slow improvements over time.
At least we have a basic standard for a summary in the form of the CCD. We have HL7 interfaces successfully sending myriad data elements from one system to another. HIEs have attempted to be central hubs for brokering medical information. Unfortunately, most US HIEs have struggled at best to deliver a reliable, comprehensive, user-friendly solution that is financially sustainable.
Medical institution data sharing aside, where is the patient in all of this? Aside from just getting records from each individual institution (often requiring payment and/or walking the long hallways to the HIM departments tucked away in our hospitals), where is the patient in the exchanges? Do they have any understanding of how their own information is queried, retrieved, shared, and assembled? Epic’s Care Everywhere is the most successful approach for record sharing that I’m aware of, yet I’ve had care at numerous Epic shops, and as a patient, I still can’t assemble and share my record electronically.
I have no idea what information each of my care providers has shared with each other. I’ve logged on to my MyChart accounts (I have several, in several states) and each shows a tiny slice of my record as of a date in time. Several have errors that I can’t figure out how to correct. I have given up as I can’t remember all of the old passwords anyhow.
There has to be a better way. Patient-driven portals or repositories sound promising for transparency, control, and monitoring the quality of the data shared. Yet those have also struggled to survive, with low adoption and weak commercial models. Even the most widely adopted portals don’t get the level of use and adoption that their creators expect.
People speculate that patients don’t really care, are overwhelmed, or just a few patients really want their information. Those may be some of the reasons, but there are other issues. Patient portals rarely show a complete picture. Provider hosted portals show what was done by that provider or that IDN.
Most providers withhold progress notes and keep the records patients can access quite limited (kudos to you Open Notes advocates out there, though!). Patient driven portals require a lot of effort to populate the information, much of it manual. But more than that, there is no motivation for patients to engage or do that work. They may have logged on a few times, seen lots of missing information, and decided that it’s not worth it.
Now take a minute with me to envision the future. Patients are in the driver’s seat with their data, be it from Companies, their primary care office, their Fitbit, the local hospital, or their smart refrigerator. They easily assemble data and broker their own data out to whoever they’d like. Maybe they share it with their PCP for free.
They share with their insurance Companies that they really did walk the average 5,000 steps per day and deserve that exercise discount. They choose to share their data with Companies for the purposes of Alzehimers research, since they went through the pain of seeing a grandparent suffer.
They are paid to share it with a pharmaceutical Companies working on a new drug, and are even contacted about participating in more in-depth research due to their specific genetic makeup. They choose to share select bits of the record with their local grocery chain as part of participation in a new eating healthy campaign, and the grocery chain rewards them for this sharing.
All of this sharing may sound scary, right? With this data flowing all over, what about breaches? How can you ensure privacy protection instead of privacy invasion? With blockchain. Immutable records of what is shared by whom, and when. Almost impossible to modify.
Check out Timicoin.io. It’s coming.