The U.S. House of Representatives Committee on Energy and Commerce's Subcommittee on Health held a hearing entitled "21st Century Cures: Modernizing Clinical Trials" last week.
Up at 5AM: The 5AM Solutions Blog
Imagine the worst: you’ve been shot, and your chances of survival are dismally slim. It goes without saying that when rushed to the ER, you’re unconscious.
The Network for Public Health Law is holding their 2012 Public Health Law conference this week in Atlanta, focusing on the Practical Approaches to Critical Challenges in Public Health Law, and I have been in attendance. Having worked in healthcare for over fifteen years, and reflecting upon the topics thus far, it was clear that we all go about our daily lives working hard and doing everything we can to accomplish our projects in Health IT with efficiency, and effectiveness, intent upon delivering value to our customers. But what struck me, was how little we really take time to think about the impact the work we are doing has upon our individual lives and those of our families.
Tags: EHR, electronic health records, electronic health record, electronic medical records, EMR, Network for Public Health Law, VLER, virtual lifetime electronic record, iEHR, integrated electronic health record
In 2009, the Health Information Technology for Economic and Clinical Health (HITECH) act was created (as part of the American Recovery and Reinvestment Act) to stimulate the migration of medical records from a paper model to an electronic one. HITECH includes Meaningful Use (MU), which are guidelines to encourage and enforce the use of electronic health records (EHRs) by doctors, clinics, hospitals, and care delivery systems throughout the country. There are three key components that define meaningful use:
Friday, March 16th, marked the release of CONNECT 3.3, an open source product that enables health information exchange, securely, across the Internet. This product is used by Health Information Exchange (HIE) organizations, hospitals, healthcare institutions, and government agencies around the world. The release of CONNECT 3.3 is important news to healthcare, as the software helps the country achieve the goal of sharing medical information to improve healthcare and lower costs. CONNECT’s release also was a big day for several of us at 5AM Solutions. For nearly the past year, several colleagues and I have been working tirelessly on the CONNECT project, which is a program of the Federal Health Architecture (FHA), an E-Government initiative managed by the Office of the National Coordinator for Health IT. Assembling and implementing the varied requirements of several government agencies, the open source community, and standards bodies sometimes led to late nights and long days. We enjoyed the work and the people we got to work with, but being a software engineer often means that you are down in the trenches, which can cause you to lose perspective on the big picture of what you are working on. After the release last week, we had the opportunity to lift our heads up and once again look at what CONNECT really means to healthcare.
SOPA certainly made a big name for itself over the past few weeks. The Stop Online Piracy Act, and it’s Senate sister bill PIPA (Protect IP Act) has been halted in both the House and the Senate after a day of protest from thousands of websites worldwide, including Google, Wikipedia, and Reddit. These web giants encouraged their users to stand up and write their representatives urging them to vote against this nasty piece of legislation which would enable censorship over the internet by private corporations who believe that foreign websites are linking and hosting content that they own.
From my first encounter as a kid with Nostradamus, I’ve been a sucker for predictions about the future. And it doesn’t hurt if they’re couched in scary, end-of-times imagery. Shout out to all my Mayan Calendar fans – it’s time to party like it’s 199 … uh, I mean 2012. Things seldom turn out the way we think they will, but it’s still fun to peer into the crystal ball of the future and make your best guess. So, to start the year off right (since it’s probably our last), I give you the gift of the future of Health IT, as seen through a glass darkly on the Interweb:
Information Week reports the following predictions from IDC Health Insights:
Electronic Health Records will be in widespread usage by US providers as 2012 comes to a close. Sadly, all of the providers will be destroyed in the cataclysmic end-of-times before they can collect on their "Meaningful Use" bonuses.
Successful Accountable Care Organizations will emerge from private or public-private initiatives. Only to be driven back deep underground by giant rocks raining down from outer space.
A minimum of 70% of health insurance and technology resources will be directed to improving consumer engagement. Unfortunately, 100% of the consumers will be busily engaged in extinction from earthquakes, tsunamis, and the plague.
Robert Rowley of Practice Fusion offers the following predictions:
Usage of web-based Electronic Health Records will continue to grow. ...Then stop suddenly on December 21st.
Real connectivity will make significant progress using point-to-point solutions, such as Direct, and platform systems, such as … that’s right, Practice Fusion. With ultimate connectivity being achieved on the 21st as space rocks mash humanity into one big mass of human jelly.
Anonymized “big data” from electronic health records will significantly increase our medical knowledge. Until anonymized “big rocks” significantly decrease it by force.
Consumer data will flourish, and become linked to personal medical data. That’s right, our data will outlive us. Some people fear the rise of the machines, but it’s really the data we should fear as it has the real advantage on us.
Kaiser Health News predicts that 2012 will be a big year in healthcare because of the continuing impact of the 2010 federal health law. While, in case you can't tell by now, I predict it will be big because of all the apocalyptic dying and destruction.
Seriously, though, what are your big predictions? Where do you think Health IT will go in 2012? I’d love to hear from you. Comment away below...Then we can all look down from Mayan Heaven in 2013 and see how right we were.
-Michael Hunter, 5AM Solutions
Whether you call it a personal health record (PHR) or a personally-controlled health record (PcHR), the notion of a person-centered, self-managed electronic medical record is seen as both an essential byproduct/outcome of health IT and its core value. I certainly yearn for the day where I am at the center of my electronic health record, flowing my health information through and among my physicians, so that my entire health care team has a clear and complete view of my health. But away from people like me in the “health IT” field, apart from the DC echo chamber, do people care about managing their health, digitally? ...Or at all? Are PHRs on the 2012 “in” or “out” list?
Next week is Thanksgiving (already?). My family is descending on my house to enjoy time together, veggies, pie, and Tofurky (that’s how we roll). The country’s Surgeon General, Regina Benjamin, will mark the day as the seventh annual “National Family Health History Day,” to encourage all American families to learn more about their family health history.
Here are three reasons why it’s useful to know your family health history:
1. Because we all know that diseases can “run in the family”
Most of us are marginally aware that family history can play a role in many common diseases, such as heart disease, diabetes, and some cancers. Some of us think about our grandfather's heart attack before we eat that cheesesteak. And we've all completed the form at doctor’s offices - the chart where you put check marks to link diseases with your family members. The reason doctors collect this information is because it gives them a quick glimpse into the disease history within our families, which they then use to consider our risk of developing certain diseases.
Every day, the family history is used by physicians to assess disease risk, determine whether screening is required, and help us understand our risks of passing diseases to our own children. It’s valuable information, worth collecting.
And knowing our history can help us change our habits. In my case, my grandfather’s early death from heart disease and my mother’s high cholesterol were factors in my decision to become a vegetarian. Knowing the truth about the family’s health is often enough to compel many people to change smoking, drinking, diet, and exercise habits.
2. Because it’s proven that family history is the best predictor of disease risk
The concept of a disease “running in the family” is real. A study last year found that a family health history is better at predicting disease risk than genomic screening: http://abcnews.go.com/Health/Wellness/family-history-predictor-disease-risk-genomic-screening/story?id=12055615
In his book The Language of Life, geneticist (and HHS head) Francis Collins writes that “family health history turns out to be the strongest of all currently measurable risk factors for many common conditions, incorporating as it does information about both hereditary and shared environment…Surely the kind of information you and your doctor should know and incorporate into your own health care.”
The bit about “shared environment” is especially key – not only do we share genes with our family, but we tend to live with or near our families (at least some of them). So regardless of whether a disease’s cause is hereditary or environmental, the history can tell us a lot.
3. Because it’s easy
Whether by jotting down a note that Aunt Edna died of breast cancer, or using more sophisticated paper or web-based tools to collect your family health history, or going all the way with personal genetic services like 23andMe, many people now are taking their health information into their own hands, assembling, recording, and saving their family health history for the benefit of their own health and that of their family members. Because it’s easy, and because it makes sense.
While you’re chowing down next Thursday, expressing thanks for all you have and are, take a couple of minutes to gather your family’s health history. It’s a simple way to understand the story of your own health.
Here are some ways and means to do so:
Mayo Clinic: Compiling your medical family tree – basics on how and why to collect the history
The Surgeon General’s My Family Health Portrait - an online tool that lets you track, print, and save your family’s health history. P.S.-5AM developed this tool
It Runs in My Family - another online genetic tool
Family Helix - a nonprofit, provides an online way to track and store your family's health history
Genetic Alliance’s Guide to Family Health History/Guide to Understanding Genetics and Health - booklets provide information and resources on the topic
CDC’s http://www.cdc.gov/Features/FamilyHealthHistory/ - covers the basics on how and when to collect you family’s history (...Thanksgiving!)
NHGRI’s Drawing Your Family Tree - describes how to create your own pedigree chart (a great visual expression of diseases in a family)
Happy Thanksgiving from 5AM--Share stories, thoughts and comments, on family history or Tofurkey, by commenting below.
-Leslie Power, 5AM Solutions