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Today, I had the opportunity to attend the Golden Spike kick-off event in Boston, MA to celebrate the first electronic health record exchange in the state of Massachusetts. The event was held in the Ether Dome at Mass General Hospital. I've visited MGH many times, but never made it to the Ether Dome.
To get to the Dome, you make your way through a series of small hallways in the depths of the hospital. Stepping into the room is like stepping back into time. Five rows, laid out in a tight horseshoe formation, look down upon the center of the room. Natural light shines through a massive grated window in the ceiling up above the last row, illuminating the floor and podium as the sun makes its way through the sky. A brilliant copper and glass dome sits above it all, shining additional light upon the room. It's a magical place for an event!
There's quite a bit of history in this old Ether Dome, a surgical amphitheater, first built in 1821. source: The Dome served as the primary surgical room for MGH from 1821 to 1867 and is famous for hosting the first surgery to use ether to anesthetize a patient in 1846.
John Halamka, the CIO of Beth Israel Deaconess Medical Center, presided over the event and opened by sharing the importance of today's date. Yes, on the same date in 1846, Dr. John Collins Warren performed the first surgery using ether in this very room. At MGH, it's known as Ether Day! Throughout today's event, light shined through the large windows and cast a glow on the speakers and attendees. You could almost close your eyes and imagine what it was like on that day in October 1846 when ether was first used to "knock out" the patient, all to eliminate the brutal pain that must surely accompany a surgery of any kind. Dr. Halamka even acknowledged the similarities between these two days: "We're here today to eliminate the pain felt by patients" that have the inability to electronically share medical record information. As a 20 year, 3x time cancer survivor, I can attest to Dr. Halamka's statement. I sat through the presentation thinking of the countless times I have hand carried my medical records, scans, X-rays, lab work, and other papers between hospitals right here in Boston. The frustration at the inability to effectively share information has been constant theme throughout the past 20 years for me as a cancer survivor. There’s unnecessary anxiety and stress that goes along with the responsibility for personally carrying your own medical records to a doctor’s appointment. During a snow storm in Boston, I had the misfortune of slipping on some ice on the way to an appointment. My body slid one way and my x-rays films went flying in another, landing in a snow bank. The rest of the morning was wasted away with worry; did the snow ruin my films? Will I have to retake all those x-rays?
Dr. Halamka noted that sometimes "you need a perfect storm for innovation." It's clear from the work carried out by the teams building the health information highway right here in Massachusetts that the storm of innovation has finally arrived.
Governor Deval Patrick spoke about the importance of quality healthcare as a public good. Everyone deserves access to quality healthcare and the Massachusetts Health Information is the first major step for this direction. One of the biggest issues in the healthcare has been the lack of coordinated care, reducing the effectiveness and overall quality of care. This lack of coordination has led to needless retesting, conflicting treatment plans, and a fractured healthcare network. These are fundamental issues that will be addressed by Massachusetts’s health information exchange. Information drives decisions that impact patient’s course of care. Without a full set of information at the point
Speaker after speaker reiterated these keys points. Interoperability, coordination, and quality care were the words of the day. From the patient perspective, these are incredible words to hear. This is what patients want. This is what patients need. Health information exchange is here in Massachusetts. It's all about the patients.
The highlight of the event was watching the live demonstration of the first electronic medical record exchange on the new Massachusetts Health Information Highway. Governor Patrick and his physician stepped to the computer at the podium, logged into MGH’s electronic health record system, and clicked “enter” to send his health record to the Bay State Medical Center. Instead of Alexander Graham Bell’s famous transmittal of “Watson, come here,” as the first sounds made its way over electronic wires, Governor Patrick said “There goes the data,” as his health record made its way across the health information exchange. A video conference showed the Bay State Medical Team receiving his information.
After Governor Patrick’s demonstration, Dr. Halamka also stepped forward and logged into the BIDMC system. He accessed his wife Kathy’s record. His wife was recently diagnosed with cancer and he recounted the frustration she felt when she realized it was up to her to transport her medical records from one hospital to another. You can read more about their experiences on his blog. He reviewed her record and added a small notation to the file: "One small step for Kathy, one giant leap for healthcare in the Commonwealth." With that, he scrolled through the list of verified recipients, selected Partners Health care, and with a click, sent her information on its way. He pointed out the security in place when setting up this information exchange and showed how the recipient is selected in a drop down menu within the application. Information cannot be exchanged without a trusted network in place and cannot be shared by simply typing in an email address and hitting send. This was a great demonstration and reassuring to know that a simply typo won’t send your electronic record off to some unknown recipient. The receiver is a verified entity within this network. The sender, who authorizes and confirms their identity upon login, is also verified. It’s an exchange of information over a trusted, secure network. While this was a small part of the overall presentation, to me this was the most important part. Showing exactly how my records can be transmitted over Massachusetts’s Health Information highway was very reassuring. I left the presentation with great confidence that my health records will not end up in a random inbox. The HIE is built to securely exchange information among trusted points along the network.
This is a great step forward for healthcare in Massachusetts. The recognition that coordinated care is the key component in the delivery of the best quality of care is enormous. Understanding the journey a patient takes on their way to achieving health is the only way to make informed decisions about a treatment or wellness plan. Congratulations to all involved in this project! Thank you for bringing us one step closer to receiving the best possible healthcare in Massachusetts.
The following post was originally posted on December 9, 2010. Almost 2 years ago. In honor of Breast Cancer Awareness Month, I've pulled this post from the archives to share with you. We still have a great deal of work to do - the Pink Ribbon has fractured the breast cancer community. It's time to work as a collaborative community, ditch the cause marketing campaigns, and refocus on our energies on the real meaning of the pink ribbon: Hope.
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As a breast cancer survivor, nothing's more infuriating than reading a story on how the Susan G. Komen Foundation actively pursues lawsuits against smaller foundations and individuals using the term "for the cure" in events or promotional materials. "Kites for the Cure". "Dancing for the Cure," "Dog Parade for the Cure." Komen's got them on their radar. Honestly, don't we ALL have better things to do... like find a CURE for cancer instead of chasing after small time charities?
You can read all about the lawsuits and actions of Susan G. Komen in the following articles:
Charity Brawl: Nonprofits aren't so generous when a name's at stake
Susan G. Komen For the Cure Wages Turf War over Trademark Slogan
Komen Lawsuit points out charity branding issues
The point that I take exception with in all these articles is how Komen defends these lawsuits. Komen's lawyers state that: "The charity views the lawsuits as responsible stewardship of our donor's funds.” Oh really? I haven't donated to Komen in a long time. However, if I was to donate again, I'd certainly hope that my funds were directed to more research, not lawsuits. That got me thinking about the total cost of the lawsuits that Komen's currently involved in. I dug a little deeper and pulled out Komen's annual report from 2009 [pdf]. I was hoping to find a line item in their annual report called "lawsuits" or "lawyer's fees". No such luck. However, I found some other interesting points.
Here's a quick review for 2009:
Komen took in $331,328,414 in donations and revenues.
Komen's General Administration costs, in 2009, were $37,148,000.
Their total fundraising costs across all programs were $29,496,000.
In the same year, the total amount given out, or allocated to:
Let's stop right here for a moment and reflect.
A organization that is actively pursuing other small charities over the use of the term "for the cure" does NOT spend the majority of their own funds towards RESEARCH FOR A CURE.
In 2009, according to Komen's Audited Financial Statements[links to PDF], the organization awarded $59,179,051 in research grants out of the total $70,147,000 that makes up the reseach figure. The remaining amount went to fees, travel, salaries, and other costs of business.
So, out of the $331,328,414 raised by public support and revenues, only $59,179,051 went to RESEARCH FOR A CURE. Only 17% of the donations received and revenue earned by Komen in 2009 went to "finding a cure." I find it very hard to believe that Komen's lawyers can justify their lawsuits by claiming they are acting as stewards for their donors' monies. For Komen to lay claim to the term "for the cure" or any variation of "the cure," shouldn't they need to show a greater effort towards funding the research required to find "THE CURE?"
135 million dollars for educational programs will certainly help educate men and women about breast cancer and treatment options, but will not help "cure" cancer.
39 million dollars for screening programs will certainly help men and women receive valuable services and help detect cancers much sooner, but will not help "cure" cancer.
22 million dollars for treatment assistance will certainly help many men and women receive badly needed treatment, medication, surgeries, and support, but will not help "cure" cancer.
Komen needs to reevaluate its mission and branding to be more in line with "curing cancer." It needs to establish its core functions to promote and facilitate efforts "for the cure" if they want to continue to chase down small charities that dare to use that phrase. For the cure, not for the lawsuits.
Health Activists: Are lawsuits like the ones Komen brings about good for the non-profit community? Are we doing enough as donors to make sure our monies are used in the best way? Is a cure for cancer just a dream? Are you surprised by this information? Let's talk!
p.s. Check out page 5 of the audited financial reports. Postage, Bank Fees, and Telephone accounted for $10,233,833 in expenses. I hope they at least bought the breast cancer stamps.
