Embedding Privacy into the Design of EHRs to Enable Multiple Functionalities

I like to follow the Information & Privacy Commissioner for Ontario, because of the insights into leading edge healthcare technology, of course in the context of privacy and security. The topic of this paper, co-written with the Infoway President is quite good. What struck me in the article was the reference to "Big Data". Is this going to become a common way of calling research using regression analysis and evidence-based medicine? "Big Data" goes far beyond just healthcare: http://www.ipc.on.ca/images/Resources/pbd-ehr-e.pdf

"As we move into an era of “Big Data,” PbD offers a holistic, proactive approach to privacy protection that can help to anticipate and address the “big harms” to privacy that are a foreseeable danger of Big Data. At the same time, PbD recognizes and aims to facilitate the benefits of harnessing Big Data for socially useful applications. In the context of designing and implementing EHR systems, PbD seeks to protect the privacy of individuals whose personal health information is contained in EHRs while enabling multiple goals – privacy and security, individual and societal benefits, confidentiality and data quality. In this way, PbD facilitates access to health information for secondary purposes while at the same time protecting the privacy and confidentiality of health information held in the EHR. This is accomplished by embedding privacy and security directly into EHR systems, through the routine de-identification of personal health information for secondary purposes, end-to-end security, and other mechanisms discussed elsewhere in this paper. PbD offers a means of elevating privacy in the Big Data world to an effective countervailing force that we are calling “Big Privacy” – a method of ensuring that privacy is embedded as a first consideration in all Big Data transactions. Consistent with PbD, the Pan-Canadian Health Information Privacy Group proactively considered the privacy implications of secondary use in its paper outlining general principles for information governance in the EHR environment."

http://www.ipc.on.ca/english/Home-Page/

The Direct Project

Part of the talk I will give at the Advances in Health Informatics Conference at York University next month will refer to the work of the Direct Project. I heard about this from reading John Halamka's Geekdoctor blog post. I thought it was a very exciting prospect for pushing health information to the personal health record. Before I give my talk, I have to become more reacquainted with it, but it looks like most news on it is coming form a twitter stream. My talk will look at the system architecture of "tethered" personal health records, and so, here is an architectural picture of Direct Project. It is a proposed Health URL - once again - the idea seems to be to be a major advance to securely transport health information. I have as yet seen any sign of pilot projects underway in Canada, but I would be most interested in seeing one started.

HL7 and NCI collaborate on clinical trial link to EHR

The HL7 group is trying to do UML models for almost anything that has health related data. This new initiative is a hat tip to Big Data and Public Health. The patient, the little guy in the whole operation, might even benefit. Hopefully, there will no longer be a disconnect between the evidence collected through participation in clinical trials, and electronic medical records. That goes as well for Personal Health Records. Both record systems are potentially rich sources of evidence based medical data, if only there were more efficient ways to capture it, without jeopardizing the autonomy and consent of patients. http://www.fiercehealthit.com/story/hl7-and-nci-collaborate-clinical-trial-link-ehrs/2012-02-28

Eiger: Wall of Death

This is one of the most unbelievable and amazing documentaries I have ever found on youtube - a BBC documentary. I was reading Heinrich Harrer's "Seven Years In Tibet" where I learned his team was the first to climb this notoriously dangerous and deadly Swiss mountain from the impossible north face. I strongly recommend following it to the end in order to learn about the teams and individuals who found their way to the top. Very inspirational.

LIfe Extension for All: Global Future Congress Announces "Avatar"

I think life extension research is a major component of ehealth. I might even venture to say it is the purpose of ehealth, but I know that sounds like idle speculation. The Global Future Congress reminds me about something I read in one of the books by Ray Kuzweil, that if people really wanted to achieve an objective they could organize something like the historic "Manhattan Project" and make a super human effort. Read more: http://www.digitaljournal.com/pr/595157#ixzz1o3UsaZbE

Playing video games 'improves eyesight'

I know the researcher in this study quite well. I wanted to sign up for one of the video game studies on amblyopia (lazy eye) because I have lazy eye, and I would get a free X-Box. I am not a gamer, but if I had the technology, I know I would become addicted to it. Now that scientist like Dr. Maurer suggest in this research, that playing video games is therapeutic for eyesight, I don't see why I don't invest in a gaming system. There is a caveat here, and that is not to believe everything you read in headlines, or anything you might happen to find on the internet. Going to the scientific article to study the findings is the best idea. Since hearing about Dr. Maurer's research, I have become hopeful that newer and better forms of vision therapy can be developed. I have read and tried the eye improvement exercises in the Bates Method and the book by Aldous Huxley called "The Art of Seeing". The cognitive basis of vision is so clear in these books and this research. http://www.telegraph.co.uk/science/science-news/9088262/Playing-video-games-improves-eyesight.html

What do predicting wine quality and evidence-based medicine have in common?

The answer is McMaster University and a book by Ian Ayers, called "SuperCrunchers, Why Thinking-by-Numbers Is the New Way to Be Smart" Through regression analysis and crunching the numbers, the quality of wines can be predicted just as well as by expert wine tasters - in advance of the harvest. There is a chapter on how McMaster University medicine developed the science of evidence-based medicine - also by looking at the numbers. This is the dawning of the age of Big Data, as we all should know.