Featured Post

Hacking Health in Hamilton Ontario - Let's hear that pitch!

What compelled me to register for a weekend Health Hackathon? Anyway, I could soon be up to my ears in it. A pubmed search on Health Hack...

Sunday, August 9, 2015

Human Error or Garmin Map Error - Again!

GPS accuracy is getting more and more precise apparently. The open street map website has an article about it <here> and so does the US Air Force government site dedicated to GPS <here>. So, I don't really know which satellite to take to task for leading me down to a dead end road after 32 miles of twists and turns and the same number of miles away from my objective! In fact however, the problem could have totally been between my brain and the device - an acronym computer users have often referred to as PEBCAK (Problem Exists Between Chair and Keyboard).

I was in Silicon Valley for a week and again was able to use a Garmin navigation device in my rented car to help me get around. The Garmin proved very useful our first visit to San Francisco, though not entirely without a few hiccups.  Turns out that Garmin is also making a fitness device called the vivoactive which is also GPS equipped, but this article is focusing on cars (and is demonstrably non-ehealth). Extreme Tech has an interesting article on how getting lost these days in a car is a lost art! However, I think getting lost while driving is an art, as long as it is intentional, and you don't need all the tech to do it. I still don't have a smart phone (or roaming charges) for example, to help get me out of lost.

One of the beauties of driving in the San Francisco bay area is going down Highway 1 towards Big Sur. This is a breathtaking trip for landlocked Ontarians like myself and I have done this before on a previous one week stay. I have been down that 17 mile scenic highway that goes through the famous Pebble Beach golf course. I had seen the magnificent vistas of rock, beach, ocean and mountains (and the palaces and homes of the plutocratic rich).

It was towards Big Sur again when I made an unfortunate decision to turn left onto Carmel Valley Road just outside of Monterey, instead of right towards the 17 Mile Road and Highway 1, where all the other cars were lined up to go. The voice of the Garmin GPS was saying turn left onto Carmel Valley Road,(G-16) while my gut instinct was saying that was the wrong way to go.

Now, the Carmel Road name seemed strangely familiar to me. Every time before a road trip I will consult my iPad Google maps the night or morning before and try to memorize routes. It just so happened that we were in a Starbucks that has WiFi just 5 minutes before this turn but I did not spend that much time consulting directions - it was a no brainer just to take Highway 1. Still, this time, I was going to give the Garmin GPS the benefit of the doubt. I have ignored it before while successfully trusting my own sense of direction, but this time it appeared that it might be right, or at least intriguingly possible, even though all the other cars clearly were not heading in that direction.

About 5 months before our trip I was studying Google maps about this area of California. I was looking in anticipation to our up and coming trip. I was trying to find the location of the Tassajara Zen Centre, that had a remote meditation retreat centre somewhere. I had long been a fan of the well known Tassajara Cookbook.  I found out that it was in such a remote area in the mountains south of Monterey, that the final stages could not even be reached by car. I had read that some people with 4 by 4 or off road vehicles could get close to it though. This was not a trip I imagined my wife would ever be in favour of making. If I had recalled at all, I would have remembered that the Tassajara Zen Centre, was accessed first along the Carmel Valley Road. That is perhaps why the name seemed familiar but it did not come into my consciousness until I noticed the road sign (probably the only one on the G16 route for all it's 30 miles length), that said Tassajara Rd!

The 6 miles or so road to the village of Carmel is just fine and there are many signs of civilization in the form of California haciendas, ranches, camps, and a few horse stables, stores, whatnot. There was even a collection of vintage cars coming at us from an Exhibition near the Carmel village.  Because of the drought this summer, everything is bone dry. All the mountains are brown. When we visited during the winter month of December it rained all the time in San Francisco, the mountains are green and it gets pitch black by 5:00pm. It really looks like dry gultch desert Western country out here now. Just outside the village though, the road immediately is less paved and maintained, and narrower, and then it starts to twist and turn, delivering at the same time a foreboding sense of starting a journey into remote uncharted regions of the Garmin map. I have been on twisting and turning roads before but after about 7 miles I pull over to consult the GPS. I am not going to be able to take much more of this, nor could the nerves of my wife.

I zoom out of the small GPS location on the Garmin screen for a bigger picture. It looks like another 30 miles of this kind of road and I am not too sure where it ends. I am hoping a beautiful vista of Big Sur and waves breaking on the coast. Little did I know that my subconscious yearning to explore the terrain near Tassajara was leading me on. After about 10 miles of twists and turns, the painted line in the middle of the road long ago disappearing, absolutely no cars seen in both directions, we do come to a vista, but it is of a remote and vast expanse of browned-out grassy dry mountains fading away off in the distance, with just the hint of the road ahead, turning and twisting. Gut wrenching decision to just continue on, hoping against hope that GPS is not wrong again. It has been wrong before. Never trust that accursed device!

In another frame of mind I would not mind this trip. I would enjoy the blue sky, the barrenness, the expanding mountainous views, and the solitude. But I am clutching onto the steering wheel, and going cautiously around blind turns.  The same morning driving in from San Mateo we took the Skyline Boulevard down to La Honda, a pretty drive along the mountain edge looking out over Silicon Valley, with giant cedar trees, no human habitations, and winding roads. Unfortunately it also had hundreds of cyclists hogging the lane, and often a peloton of Porches gunning trough gear changes on the twisting road - some sort of Silicon Vally millionaires Sunday morning fun in our Porches club - and we saw more than several peletons of them. I had been in a head on car accident as a kid on the small dirt roads in Northern Ontario, a truck coming over the hill in the centre of the road blind to us oncoming. I know we are nowhere near human habitation now, and we don't have a smartphone. We do have enough gas. My wife, a natural worrier, is not making this stress any easier. Then I saw the road sign indicting Tassajara Rd leading off to the right. It was the first branching road we came across after 15 miles, and I knew that I had unconsciously deceived myself for good. Biggest fool on planet Earth - me - bigger than the mountains on Pluto (way off from the Earth). And about to be greater.

Thankfully there were no cliff edge look overs into sheer drops into bottomless ravines, no nothing quite Nepal-like like that. We seemed to be blazing through a lower elevation in the mountains, that were tending to get higher as we progressed. It wasn't until we heard the Garmin navigator suddenly speak after an hour of radio silence -  "Turn right on Arroyo Seco" - that the mountainous terrain began to soar over our heads - huge great peaks up to over 2000 meters - I was not really sure how high as I was kind of afraid to look up and take my eyes off the road. We really felt like we had broken through into a different terrain altogether, but there was no ocean there. I am still trying to locate these mountains on Google Earth but I believe it is in the Santa Lucia range. After 32 miles of twists and turns Arroyo Seco is a freshly paved road with a painted line down the middle and we are heading off to very soon seeing the beautiful mountains and ocean of Big Sur, or so we hope against hope.

We had gone only a few miles down Arroyo Seco (which means dry creek or something), when we came to what appeared to be a dead end. It was not possible! We had arrived at a park gate house. I just googled it now and it is the Arroyo Seco Campground in the Ventana wilderness and the Los Padres National Forest. Four park ranger people appeared to be crammed into the little gate house. I look ahead and see that our freshly paved road does a complete tight circle around the gate house. GPS error again! The impossible is possible. I asked the park rangers if the road continues on to Highway 1. Apparently it used to, up until 1995, but all that is left now is only fit for horses, mules or hikers.  I guess this isn't the way to Big Sur then, and I hear them chuckling inside. "You wouldn't be the first to make a GPS mistake and end up here". Guess not. The problem now, is how to get back? Don't tell me we have to take the same road back!

Yes, in fact, taking the same road back was the best option. It was coming on to 6:00pm. It would soon be getting dark. Our day trip to Big Sur was over. We would never get there that day before almost sunset. The two other options were going back the newly paved road to Greenfield then up Highway 101 to Soledad and eventually San Jose and San Francisco. I didn't think to ask them to actually see a paper map but I can no longer think my Garmin map was accurately reflecting that or any route. I turn off and cram the Garmin into the console. Later when I looked at Google Earth that wasn't so bad an option. The other option presented by the Park ranger made no sense at all - something about crossing through a protected military area and asking for a permit, but on inspecting the map later, it was more of a straight line to Big Sur, but through God knows what in terms of terrain. So, shame face and full of exasperation, we go back down the same road again.

How could that Garmin map be 20 years out of date? Why were there no signs on the G16 to indicate that if you are looking for the way to Big Sur on your Garmin device you are going in the wrong direction?

At this point, I thought my wife was probably going to kill me with her stress level but she bore this fate bravely and cooly. This was no time to panic. We had already gone down that road before and we knew the twists and turns. All we had to do was hang on for another hour and we would survive. On the mercifully uneventful way back we stopped to take a picture of the Tassajara Rd sign, just to prove we had been there. We took the picture with our digital camera which I don't believe embeds GPS coordinates. If I we had used our smartphone it would embed GPS and I have found locations from photos by looking up the their GPS information before. All you have to do is right click on a photo and read the properties for the GPS information. Found out a photo I didn't recognize sent by a friend was at Napoleon's Tomb in Paris that way.

Just for those in the future who may want to try this drive, it is much easier coming in or going out through Greenfield, in my opinion. And for those who like motorcylces, the route has been named one of the top 5 motorcylce routes in Central California.  In retrospect, motorcycle or not, it was a privilege to get screwed by the Garmin GPS, in order to experience the bone dry remoteness of the mountains of Central California. No wonder buddhist zen practitioners stay out there seeking enlightenment. Even with all the twists and turns, there ain't no one coming around the corner - it is all emptiness.

























Wednesday, July 1, 2015

Fitbit and Personal Health Informatics

A surprise gift for father's day was a Fitbit ChargeHR. The HR stands for Heart Rate, that measures beats per minute (BPM). It doesn't measure blood pressure, and I don't think any device like this on the wrist will be able to do that soon. I have been counting my walking distances, steps up stairs, calories and sleep activity for about a week now. It feels good to have entered the world of the "quantified self "and big data personal health informatics at more than just a theoretical level, as I have been doing on this blog for the past 4 years. I actually have a blog post about Fitbit from 3 years ago <here>!

The data is sent wirelessly to a small "dongle" on my MacBook anytime I am within 20 feet of it. I was surprised to see how this data easily integrated with Telus (Microsoft) Health Space (Healthvault) from the Fitbit.com login settings account. The power of the API is truly awesome.

As I knew before when I was looking at reviews for smart watches, the Fitbit ChargeHR is not a great watch for telling the time. However, one advantage is I find myself saving a lot of time by not looking at my watch to find out what time it is so often. All in all, I find myself wanting to wear it more than the old watch.

Sleeping with the watch is perfectly unobtrusive. There are continual double green sensor lights flashing for the BPM readings but it is hidden under the wrist. At a different viewing angle you can see the green lights. Double tapping at night will illuminate the clock (and day of the month) but during the day it is very difficult to see the digital time in glare of light of day. When you wake in the morning, sleep activity data is automatically transmitted to the MacBook or the Fitbit app on the iPad. via the dongle. The sleep data is a bit hard to interpret. Did I really only get 5 hours sleep? Anyway, I am starting to make some sense of the times I may have been awake or restless.

If you set a goal for 10,000 steps it will buzz on your wrist when you achieve the goal. You are also sent an email congratulating you, which is repeated in the weekly email data digest updates. I tracked food consumption for data on calories, sodium levels, etc. for a few days, and this is very interesting information for me. Since I have not really changed weight since I was a teenager, I don't really have any weight goals, but I know I can align readings from the gym equipment which tracks BPM and calories burned with the Fitbit. When I am not going to the gym, I can utilize those readings. But like I said, watching calories burned is not a science I follow much because of my metabolism.

Even though the data is integrated into the Telus HealthSpace, which is a free personal health record if you have a Microsoft login, I still don't find myself using the personal health record that much (yet). I also have a McMaster PHR (former MyOSCAR) and a Health and Wellness Companion PHR through my employer's health insurance company, in both of which I have just stepped into the shallow end of the pool. I tend to keep a Word document log and paper file of health related events a lot more. If the PHR was integrated with our family health team, I am sure I would use it more.

So, I think we are still a way off from wider adoption of personal health records as integrated tools for the physician's electronic medical record. A lot depends on more research, and of course evolving software breakthroughs like APIs. I am a community volunteer with the McMaster University Family Medicine TAPESTRY program, and I can see first hand the uptake on PHRs and how much education and training is required before they are being used effectively. On our visits to seniors in our communities we also help promote the use of the McMaster PHR. Like any technology, and the toothbrush comes to mind, use comes from developing good habits, as well as promotion from health care professionals.

Because we have entered a digital culture, many people will be entering a personal health record, not through their family medicine clinic, but through some form of personalized health informatics, like Fitbit data, or smart phone apps. There will be a point when physician medical practices will want to buy into accessing or making that data available.


Tuesday, April 14, 2015

Clinical Research Informatics

American Medical Informatics Association
https://www.amia.org/applications-informatics/clinical-research-informatics

Canadian Primary Care Sentinel Surveillance Network:
 http://cpcssn.ca/

IRB Class Model
 http://irb-dam.bmi.utah.edu/v1/index.htm?goto=3:1:181



Clinical research informatics: a conceptual perspective


Abstract

Clinical research informatics is the rapidly evolving sub-discipline within biomedical informatics that focuses on developing new informatics theories, tools, and solutions to accelerate the full translational continuum: basic research to clinical trials (T1), clinical trials to academic health center practice (T2), diffusion and implementation to community practice (T3), and ‘real world’ outcomes (T4). We present a conceptual model based on an informatics-enabled clinical research workflow, integration across heterogeneous data sources, and core informatics tools and platforms. We use this conceptual model to highlight 18 new articles in the JAMIA special issue on clinical research informatics.
Keywords: Clinical research informatics, clinical and translational research, visualization of data and knowledge, knowledge representations, methods for integration of information from disparate sources, data models, data exchange, knowledge bases, knowledge acquisition, knowledge acquisition and knowledge management

Saturday, March 14, 2015

Kurzweil Accelerating Intelligence weekly newsletter

I always look forward to Fridays when I get to read the Kuzweil Accelerating Intelligence newsletter. It has got to be one of the seven wonders of the world. The future is always HERE  NOW.




Email not displaying correctly?
View it in your browser.
KurzweilAI | Accelerating Intelligence. Newsletter
Friday March 13, 2015
WEEKLY EDITION
LATEST SCIENCE & TECHNOLOGY NEWS

Turning smartphones into personal, real-time pollution-location monitors
March 13, 2015

A small pollution sensor was used to measure their black carbon level continuously, combined with an Android smartphone with CalFit software for recording GPS information on user location (credit: Mark J. Nieuwenhuijsen et al./Environmental Science & Technology)Scientists reporting in the ACS journal Environmental Science & Technology have used smartphone and sensing technology to better pinpoint times and locations of the worst air pollution, which is associated with respiratory and cardiovascular problems. Most such studies create a picture of exposure based on air pollution levels outside people’s homes. This approach ignores big differences in …more…


Out of their minds: a thrilling ride that adapts to riders’ brain activity
March 13, 2015

(credit: Horizon Digital Economy Research)A new ride called Neurosis, based on research from The University of Nottingham, adapts the experience to the rider’s own brain activity. Its world premiere will be at the FutureFest festival taking place in London this weekend. It draws on research being conducted by performance artist/professor Brendan Walker, a principal research fellow in the University’s School of … more…


Chameleon-like artificial ‘skin’ shifts color on demand
March 13, 2015

Developed by engineers from the University of California at Berkeley, this chameleon-like artificial "skin" changes color as a minute amount of force is applied. (credit: The Optical Society/OSA)Engineers from the University of California at Berkeley have created an incredibly thin, chameleon-like material that can be made to change color on demand by simply flexing it with a tiny amount of force. This new material-of-many-colors offers intriguing possibilities for an entirely new class of display technologies, color-shifting camouflage, and sensors that can detect … more…


Vast underground ocean discovered on Jupiter’s largest moon
March 13, 2015

This is an illustration of the interior of Jupiter's largest moon, Ganymede. It is based on theoretical models, in-situ observations by NASA's Galileo orbiter, and Hubble Space Telescope observations of the moon's aurorae, which allows for a probe of the moon's interior. The cake-layering of the moon shows that ices and a saline ocean dominate the outer layers. A denser rock mantle lies deeper in the moon, and finally an iron core beneath that. (credit: NASA, ESA and A. Feild/STScI)
"A deep ocean under the icy crust of Ganymede opens up further exciting possibilities for life beyond Earth” --- NASA
NASA’s Hubble Space Telescope has the best evidence yet for an underground saltwater ocean on Ganymede, Jupiter’s largest moon. The subterranean ocean is thought to have more water than all the water on Earth’s surface. Identifying liquid water is crucial in the search for habitable worlds beyond Earth and for the search of life as … more…


A ‘visual Turing test’ of computer ‘understanding’ of images
March 12, 2015

Athens, Baltimore, Hong Kong, Miami. What are those people doing? A new evaluation method measures a computer’s ability to decipher movements, relationships, and implied intent from images by asking questions (Credit: Brown University)Researchers from Brown and Johns Hopkins universities have come up with a new way to evaluate how well computers can “understand” the relationships or implied activities between objects in photographs, videos, and other images, not just recognize objects — a “visual Turing test,” as they describe it. Traditional computer-vision benchmarks tend to measure an algorithm’s … more…


The corrugated galaxy — Milky Way may be much larger than previously estimated
March 12, 2015

The Milky Way galaxy is at least 50 percent larger than is commonly estimated, according to new findings that reveal that the galactic disk is contoured into several concentric ripples. (Credit: Rensselaer Polytechnic Institute)The Milky Way galaxy is at least 50 percent larger than is commonly estimated, according to new findings that reveal that the galactic disk is contoured into several concentric ripples. The research, conducted by an international team led by Rensselaer Polytechnic Institute Professor Heidi Jo Newberg, revisits astronomical data from the Sloan Digital Sky Survey … more…


A ’3D printer’ for customized small molecules such as drugs
March 12, 2015

3D Printer for Small Molecules1Howard Hughes Medical Institute scientists have developed a simpler way to synthesize small molecules, eliminating a major bottleneck in creating new medicines. As the scientists note in the March 13, 2015, issue of the journal Science, “small-molecule syntheses typically employ strategies and purification methods that are highly customized for each target, thus requiring automation solutions to … more…


Bio-inspired eye stabilizes robot’s flight, replaces inertial navigation system
March 11, 2015

The BeeRotor robot, equipped with an eye inspired by that of insects (credit: © Expert & Ruffier (ISM, CNRS/AMU))Biorobotics researchers have developed the first aerial robot able to fly over uneven terrain that is stabilized visually without an accelerometer. Called BeeRotor, it adjusts its speed and avoids obstacles thanks to optic flow sensors inspired by insect vision. It can fly along a tunnel with uneven, moving walls without measuring either speed or altitude. … more…


Silk may be the new ‘green’ ultra-high-capacity material for batteries
March 11, 2015

Silk is graphetized (left) to create porous nitrogen-doped carbon nanosheets as an improved ultra-high-capacity material for battery anodes and supercapacitors (credit: Jianhau Hou et al./ACS Nano)Scientists at Beijing Institute of Technology have developed a new “green” method to boost the performance of widely used lithium-ion (Li-ion) batteries, using a material derived from silk. Currently, graphite (a form of  carbon found in “lead” pencils) is used in Li-ion energy storage devices, including batteries and supercapacitors. Chuanbao Cao and colleagues found a … more…


‘Heart on a chip’ reduces time and cost in drug testing for safety and efficacy
March 10, 2015

The “heart-on-a-chip” developed at UC Berkeley houses human heart tissue derived from adult stem cells. The system could one day replace animal models for drug safety screening. (credit: Anurag Mathur, Healy Lab)
Replaces animal models, which have a high failure rate in predicting human reactions to new drugs
A UC Berkeley research team led by bioengineering professor Kevin Healy has developed a network of pulsating cardiac muscle cells that models human heart tissue. They have also demonstrated the viability of this system as a drug-screening tool by testing it with cardiovascular medications. This “organ-on-a-chip,” housed in an inch-long silicone (a rubberlike material) device, … more…


Drugs that dramatically increase healthy lifespan discovered by Scripps Research, Mayo Clinic
March 10, 2015

Sprycel (credit: Bristol-Myers Squibb)A research team from The Scripps Research Institute (TSRI), Mayo Clinic and other institutions has identified a new class of drugs that in animal models dramatically slows the aging process, alleviating symptoms of frailty, improving cardiac function, and extending a healthy lifespan. They found two drugs — the cancer drug dasatinib (sold under the trade name Sprycel) and quercetin, …more…


Future farming to be based on robots and big data
March 9, 2015

QUT's AgBot II (credit: QUT)The farm of the future will involve multiple lightweight, small, autonomous, energy-efficient machines (AgBots) operating collectively to weed, fertilize and control pest and diseases, while collecting vasts amount of data to enable better management decision making,” according to Queensland University of Technology (QUT) robotics Professor Tristan Perez. “We are starting to see automation in agriculture for … more…


First detailed microscopy evidence of ‘nanobacteria’ at the lower size limit of life
March 9, 2015

This cryo-electron tomography image reveals the internal structure of an ultra-small bacteria cell like never before. The cell has a very dense interior compartment and a complex cell wall. The darker spots at each end of the cell are most likely ribosomes. The image was obtained from a 3-D reconstruction. The scale bar is 100 nanometers. (Credit: Berkeley Lab)Scientists have captured the first detailed microscopy images of ultra-small bacteria believed to be about as small as life can get. The existence of ultra-small bacteria (aka “nanobacteria” or “nannobacteria”) has been debated for two decades, but there hasn’t been a comprehensive electron microscopy and DNA-based description of the microbes until now. They are about … more…


Hidden toxins found in ‘green,’ ‘all-natural,’ and ‘organic’ products
March 8, 2015

(credit: iStock)
Fewer than three percent of volatile ingredients identified
A University of Melbourne researcher has found that common consumer products, including those marketed as “green,” “all-natural,” “non-toxic,” and “organic,” emit a range of compounds that could harm human health and air quality. But most of these ingredients are not disclosed to the public. Prof. Anne Steinemann* investigated and compared volatile organic compounds (VOCs) emitted … more…

NEW EVENTS

FUTUREFESTFutureFest

Dates: Mar 14 – 15, 2015
Location: London, England

more...


OFC2015colorlogoOFC

Dates: Mar 22 – 26, 2015
Location: Los Angeles, CA

more...


8th AGI conferenceAGI-15 @ Berlin

Dates: Jul 22 – 25, 2015
Location: Berlin, Germany

more...


tedmed_logo_retinaTEDMED 2015

Dates: Nov 18 – 20, 2015
Location: Palm Springs, CA

more...

Visit KurzweilAI.net


KurzweilAINetwork, Inc. 733 Turnpike Street Suite 193 North Andover, MA 01845 USA.

Wednesday, February 4, 2015

Personal Health Record Push to Apps

I sometimes follow the HL7 group on Personal Health Records. I received this email from a member of the group. I find it interesting that pushing medical records to a personal health record is becoming better:

NBB4C makes it easier for providers to share health information with their patients so that their patients can do what they want with it.





February 2015



Clearing the Way for Patients to Get Access to their Data
National Association for Trusted Exchange Unveils New Trust Community for Exchange with Consumers
WASHINGTON, D.C. (February 3, 2015) – The National Association for Trusted Exchange (NATE) today kicked off its new NATE Blue Button for Consumers (NBB4C) Trust Bundle at the 2015 ONC Annual Meeting with a surprise display of interoperability in patient-mediated exchange.  Shortly after NATE’s announcement, Greg Meyer, Director, Distinguished Engineer, Cerner Corporation, demonstrated how a provider using a Cerner electronic medical record (EMR) can simply push a patient record to the patient's personal health record (PHR), in this case to the Humetrix iBlueButton app running on the patient's smartphone.

The new NBB4C Trust Bundle helps relying parties to identify consumer facing applications (CFAs) that meet or exceed criteria considered to be the most important characteristics of a trustworthy steward of consumer health information, while still enabling patients to benefit from the value of having access to their health information.  Participation in the trust bundle will facilitate secure exchange of health information from provider-controlled applications to consumer-controlled applications such as PHRs using Direct secure messaging protocols.

“Thank you to my colleagues at Cerner and Humetrix for helping NATE demonstrate the capabilities of the new NATE Blue Button for Consumers Trust Bundle at the ONC Annual Meeting.  Greg’s demonstration today shows that the NBB4C is ready now to enable real world exchange between provider-facing applications and consumer-facing applications, empowering the consumer to get access to their data,” said NATE’s CEO Aaron Seib.  “Our industry achieved a major milestone today.  We studied the issues around securely sharing information from providers to patients and together we took a leap of faith.  Consumers across the country will now have more control over their care.  NBB4C gets the information flowing to where it should be: in the hands of the patient.  I look forward to the day when patients across the nation routinely download their health information into a consumer-facing application of their choice and use it to improve their lives and the lives of those they love.”

The NBB4C Trust Bundle is the result of the next generation of NATE’s ongoing PHR Ignite Project and incorporates lessons learned from NATE’s administration of the Blue Button Consumer Trust Bundles.  Over the past year, NATE and a task group made up of thought leaders in the patient-mediated exchange space worked together to develop a set of criteria and expectations that balances what is a ‘must have’ for today and what can wait until tomorrow, what is practical as a starting point and what is a showstopper that would kill consumer engagement if introduced.  In November 2014, NATE crowd sourced the trust framework, calling for and receiving comments from across the industry.  In January 2015, the NATE Board of Directors approved the workgroup’s recommendation for release into production.

“The NBB4C establishes a practical framework that will enable patients to securely exchange health information with their providers without burdening the patient with unnecessary steps to obtain their data and share it with whomever they choose,” said MaryAnne Sterling, Consumer Ombudsman for the NATE Board of Directors.  “As a long time caregiver for my aging parents, this work is important to all of us who manage healthcare on behalf of others.  I have confidence that applications participating in the NBB4C will meet or exceed my expectation that my family’s health information will be confidential and secure.”
Interested CFAs may begin onboarding to the NBB4C Trust Bundle now at http://nate-trust.org/trustbundles.  Stakeholders interested in participating in the next phase of NATE’s work in consumer-mediated exchange should consider NATE membership or subscribe to news from NATE’s PHR Community.
# # #
NBB4C makes it easier for providers to share health information with their patients so that their patients can do what they want with it.
About National Association for Trusted Exchange
The National Association for Trusted Exchange (NATE) brings the expertise of its membership and other stakeholders together to find common solutions that optimize the appropriate exchange of health information for greater gains in adoption and outcomes. Emerging from the Western States Consortium, a pilot project supported by the Office of the National Coordinator for Health Information Technology (ONC), NATE was established as a not-for-profit organization in May 2013. Consistent with NATE’s mission to address the legal, policy, and technical barriers that inhibit health information exchange between entities within a state and across states, NATE leads and participates in a number of ongoing and emerging projects in the HIE domain. NATE has been operating its own Trust Bundles in production since November 2012 and recently took over administration of the Blue Button Consumer Trust Bundles.  Working with a broad set of stakeholders through multiple task forces, crowdsourcing and a call for public comment, NATE is proud to make available the first release of NATE's Blue Button for Consumers (NBB4C) Trust Bundle beginning in 2015.

About Cerner 

Cerner’s health information technologies connect people, information and systems at more than 18,000 facilities worldwide. Recognized for innovation, Cerner solutions assist clinicians in making care decisions and enable organizations to manage the health of populations. The company also offers an integrated clinical and financial system to help health care organizations manage revenue, as well as a wide range of services to support clients’ clinical, financial and operational needs. Cerner’s mission is to contribute to the improvement of health care delivery and the health of communities. Nasdaq: CERN. For more information about Cerner, visit cerner.com, read our blog at cerner.com/blog, connect with us on Twitter at twitter.com/cerner and on Facebook at facebook.com/cerner.
As of February 2, 2015, Cerner Corporation acquired Siemens Health Services.  Certain trademarks, service marks and logos set forth herein are property of Cerner Corporation and/or its subsidiaries. All other non-Cerner marks are the property of their respective owners.
About Humetrix
Humetrix has pioneered the development of innovative consumer-centered IT solutions over the past 15 years, which have been deployed around the world.  The company’s award winning Blue Button enabled apps are the mobile embodiment of the U.S. Federal government Blue Button initiative available to more than 150 million Americans. Humetrix’s HHS award winning emergency and disaster preparedness mobile apps are now being advocated by EMS agencies across the US and were demonstrated at the White House Innovation for Disaster Response and Recovery Demo Day last summer. For more information, visit www.ibluebutton.com and www.humetrix.com


Copyright © 2015 National Association for Trusted Exchange. All rights reserved.
Contact email: meryt.mcgindley@nate-trust.org

You are receiving this message because you have an interest in health information exchange.

Tuesday, January 27, 2015

Personalised Medicine and/or Personalised Health Information Services

I came across a website and eHealth service recently called Medivizor. Seems like I have had the wrong idea about what "personalised medicine" means. I needed to enter it as a search term in Pubmed and discovered 932 articles that had nothing to do with my idea of it. That is, my idea was more in line with the health information services provided by Medivizor. The articles I found in Pubmed were more like "personalized genomics or pharmaceuticals". For example, this article: "Metabolomics as a tool for drug discovery and personalised medicine. A review."

While there may be nothing wrong with that, especially if they want to use genomics to replace parts in me, my idea had more to do with the kinds of health information one should be getting through a personal health record (ePHR), depending on one's own unique state of health. But if I do a Pubmed search on "personalised medicine and personal health records", I get almost exactly what I am thinking about (but only 6 articles). The first article is called:

Wang HQ, Li JS, Zhang YF, Suzuki M, Araki K.
Artif Intell Med. 2013 Jun;58(2):81-9. doi: 10.1016/j.artmed.2013.02.005. Epub 2013 Mar 5.
People search the net for health information and Google is a vast resource. It is better to narrow the scope and only get the health information related to one's personal conditions or searching - be they chronic or not - and to make sure that information is trusted. The Optimal Aging Portal is one such service, but at the current time, that information isn't being personalised or fed into individual ePHRs. All is not lost: patients do have their family doctor for personalised medical attention. End of story.

Getting that trusted health information, if it isn't directly from your family doctor, is a work of monumental scientific promise. A recent overview article that caught the interest of the health informatics community is found here: "Stop Googling your health questions. Use these sites instead":
 http://www.vox.com/2014/9/8/6005999/why-you-should-never-use-dr-google-to-search-for-health-information
That's a lot of knowledge translation to get healthcare consumers to wise up about the health information they are seeking.

The best idea would be if the there is a health informatics professional(s) in the family health team who can work in consultation with the family doctor so that personalized and trusted health information most relevant for them is getting to them through the ePHR. Can't leave it all up to AI and algorithms, but who knows?