In it’s broadest definition, a portal is a doorway from one place to another. On the internet, a portal is a site that has links to other sites. In health care IT, the term refers to a feature of an electronic medical record that gives patients the ability to see parts of their medical record.
In each of these definitions there are two important things that are consistent:
1. To access what’s on the other side, a person must find the portal.
2. What is on the other side of the portal is not controlled by the person using it.
This is very important in the area of my concern: health care IT. Our old friend “Meaningful Use” includes the requirement that the EMR system must “Provide patients the ability to view online, download, and transmit their health information.”
In case you’ve forgotten (deliberately or not), “Meaningful Use” is a program to encourage use of EMR by doctors, paying them real cash money if they meet the prescribed requirements. The main way EMR vendors accomplish this provision is through the use of a “patient portal.”
So are portals the answer to patient engagement via online tools? Are they the answer to e-Patient Dave’s demand to “Gimme My Damn Data?” I don’t think so. They may be a step in the right direction, giving people some of the information they need, but there is still a wide gulf between giving someone a cup of water and ending a drought.
Continue reading “Tool Kit: Why Portals Don’t Work Very Well”
Filed Under: Uncategorized
Tagged: Access, Data Rights, e-Patient Dave, Open Notes, Portals, Rob Lamberts
Nov 10, 2012
In a few days, I will be releasing the most controversial healthcare project I have ever worked on. But you do not need to take my word for it. I will be releasing a completely new healthcare data set. That data set, which will remain a “Mystery Data Set” until its release to the healthcare data scientists attending Strata RX, should completely revolutionize the way we think about healthcare delivery in the United States.
This mystery data set is the first real outcome of the Patient Skunkworks project. Patient Skunkworks is a new way for me to try and create high-impact but low-profit software projects. This is part of a new Not Only For Profit software development model that I have been working on. The new company forming to do this work will be called Not Only Development.
I will be releasing this data during the last keynote on the first morning (Oct 16) of the 2012 Strata RX conference. There is simply no way, in a single keynote, to even begin understanding all of the ways that this data set will be leveraged to improve healthcare. More importantly, there is really no way to adequately explain why I would choose to give away such a valuable and dangerous data set.
To help people digest the implications of this data set, I will be writing two articles about the data set. This one, before the release which helps to explain the underlying motivation behind the release, and another one after the release explaining what the data set is, and how I think it can be leveraged.
I am releasing this dataset because I believe that the only way to solve the problems in healthcare is to embrace a radical openness with health data. Healthcare data, with the exception of patient identity data, belongs in the open, in the sunlight. When used correctly, I believe that healthcare data should make patients feel empowered, and everyone else in the healthcare industry uncomfortable. I believe that patients deserve deep, dangerous and real access to data. I think when we start talking about how data might actually be dangerous for patients, its just a sign that we are “doing it right”. I call this concept Radical Access to Data (and yes, that recursively spells “RAD”).
Continue reading “The Mystery Data Set”
Filed Under: THCB
Tagged: Blue Button, Direct Project, Fred Trotter, Hacktivist, Health Data, Mystery Data Set, Not Only Development, Open Notes, Patient Skunkworks, Radical Access to Data, software, Strata RX, Susannah Fox
Oct 12, 2012
A few years ago, Tom Delbanco and Jan Walker pitched us with a simple idea: Patients should routinely be able to see the notes that physicians write about them. Now it’s true that we all have the legal right to see these notes, but obtaining them is anything but routine. The process involves phone calls, faxes (sic), duplicating fees and all sorts of other demoralizing steps. The net result is that reviewing your doctor’s notes about you is a rare experience.
Tom and Jan said that the physicians with whom they had spoken about this idea were split. Some were interested, some were resigned: They recognized that transparency was an increasingly powerful wave and that the world seemed to be heading this way, and the others thought they were crazy―notes were for documentation and communication among doctors and were never intended for patients. The arguments were of a religious quality―they were about belief and values. The obvious solution was to test the idea and let data help sort it out. Today, with the publication of the study results in the Annals of Internal Medicine, that debate is now illuminated.
One hundred and five primary care doctors, more than 19,000 patients and 12-months of testing at three sites has brought us to some striking findings: Patients overwhelmingly support open notes; they report significant benefits from it; and doctors reported that the effects on their practice have been minor. I encourage you to read the full paper so you get the full context (and do pay attention to the limitations section). You’ll find a number of interesting results. Here are three that I think are especially worth reflecting upon:
1. 60-78% of patients (depending on the study location) reported that they took their medications better. This is self-reported data, so the numbers might be exaggerated, but this finding, along with other results related to taking better care of oneself and understanding one’s health conditions better, suggests there’s a significant potential for clinical benefit.
Continue reading “OpenNotes: The Results Are In”
Filed Under: Health 2.0, THCB
Tagged: Health Data, Open Notes, Robert Wood Johnson Foundation, Stephen J. Downs
Oct 1, 2012