My father passed away late last Friday night of a most insidious disease called multiple system atrophy (MSA). It’s a rare, progressive, neurodegenerative condition that presents itself with symptoms similar to those of Parkinson’s disease, but it is far more aggressive and debilitating. Essentially, muscles stop working until the disease kills you. In my dad’s case, he ultimately lost the ability to breathe.
Nobody knows the cause of MSA and there is no cure. There really aren’t even any effective treatments. You can only treat the symptoms with medications designed for Parkinson’s to address muscle stiffness and such, but that’s like standing in front a speeding train with a stop sign. It’s a futile battle. My dad never had any real health issues other than a herniated disk until he was diagnosed with what was thought to be Parkinson’s less than five years ago (MSA didn’t really come into the picture until maybe a year and a half ago). He ate well, exercised somewhat regularly and generally took pretty good care of himself before the disease came along. Now he’s dead at the relatively young age of 68 after an excruciatingly fast decline that kept him hospitalized for his final month.
He fought the disease valiantly and courageously, but he never got the chance to retire. He was forced to stop working because he was physically unable to continue. He never even got to come home to die. The end came so fast that we didn’t get past the first hospice discussion.
As sad as it is to lose my dad in the way that I did, I want something positive to come out of his ordeal. He was selfless, kind and generous in life, and my family intends to carry on his legacy in some way that we haven’t had time to figure out just yet. I want to use his memory and my little corner of the Internet to help educate people about MSA and about patient safety.
What does patient safety have to do with this, you ask? My dad had pretty terrible care at a poorly run community hospital near his home for more than three weeks before he was transferred to the wonderful Georgetown University Hospital in Washington for what turned out to be his final days. The contrast was striking.
The community hospital was a place of inadequate communication, broken processes, obsolete workflows, neglect and harm. My dad came in with what turned out to be a urinary-tract infection. They treated that with antibiotics, but he developed pneumonia in a matter of days—a condition a doctor admitted he had acquired in the hospital. So he was transferred to intensive care, where the hospital could make a lot more money despite being responsible for the complication. (Perverse incentives rule in American healthcare.) My dad was a Medicare beneficiary, so you and I, as taxpayers, get ripped off by the incompetence.
Meanwhile, the clinicians there, who had been trained to treat the acute symptoms, neglected the MSA for more than a week, even taking him off his regular meds for several days, during which time my dad’s muscles continued to stiffen. Physical therapy was essential to prevent further atrophy. The order went in for him to receive physical and occupational therapy at least three times a week, but the PT and OT were nowhere to be found for a week or more.
Meds that had been ordered didn’t get delivered. One night while I was there, a perky medical assistant or tech or someone of that ilk burst into the room announcing it was time for an AccuCheck test, and nearly went through with taking a small blood sample before I stepped in to ask what was going on. She explained that it was a test for blood sugar (who would know what AccuCheck was if they didn’t have diabetes or some familiarity with the healthcare industry?) only after I enquired, but I stopped her to tell her that my dad did not have diabetes. Because of the MSA, he had difficulty speaking and would not have been able to stop someone acting so quickly. It turned out that the tech had gone to the wrong room. The hospital did require clinicians to scan bar codes before administering tests and meds, but who knows if the system really worked?
Later that evening, the nurse nearly gave my dad an eye drop that had not been ordered. The proper instructions were to administer an ophthalmic drug orally, but only if he had excess saliva. The nurse didn’t see that part of the note, despite the fact that the ICU had a partial EHR (Cerner, for those of you keeping score at home) with electronic medication lists.
The infectious disease specialist at the community hospital was not even familiar with MSA — and he didn’t bother to tell us that for three weeks. It should be his professional duty to call in an experienced neurologist or consult with my dad’s personal physician.
Worst of all, my dad stopped breathing for a few seconds last week under questionable circumstances and was intubated, despite the fact that he had an advance directive on file specifically stating that he did not want to be intubated.
At Georgetown, we saw nothing but compassion and competence. Care was well coordinated. People talked to each other. Clinicians huddled together during shift changes to discuss all the patients on the ward. The medical director of the ICU, a pulmonologist, personally managed my dad’s case. The neurologists at this major teaching hospital had seen MSA before, but that didn’t stop them from talking with my dad’s personal physician. It was too late to save my dad’s life, but he died comfortably and with dignity at Georgetown, without the needless agony he endured at the other place.
I am now vowing to dedicate my own career to educating as many people about MSA as possible and about the danger of uncoordinated care and poorly designed workflows. Interestingly, one of the last stories I wrote before my father passed and before I took leave was a piece in InformationWeek about patient engagement. I love the mantra of the Society for Participatory Medicine that I mentioned in the story: “Nothing about me without me.”
Every patient should live by those words. And every healthcare facility should respect that concept.
Rest in peace, Dad. You have not died in vain.
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The Federal Communications Commission is poised to open two segments of the wireless spectrum for medical patient monitoring, chairman Julius Genachowski said in a press conference in Washington, D.C. this morning.
New rules, which the agency will vote on next week, will allow healthcare providers to use wireless spectrum for "medical body-area networks"--or MBANs--which can transmit information from, and between, mobile medical devices both in the hospital and at home, according to Genachowski. He predicted that the expansion will allow providers to monitor patients vital signs throughout the continuum of care, prevent adverse events and hospital readmissions, and ultimately lower healthcare costs.
Interestingly, hospitals won't be the only ones using the expanded spectrum bands. They'll actually share the spectrum with commercial test pilots. The new spectrum rules will allow "distinct but compatible users to share these airwaves," Genachowski said. It also "will increase the spectrum capacity and enhance the reliability of wireless medical technology."
One key way MBANs will improve patient outcomes is by making monitoring ubiquitous and unintrusive, according to Richard Katz, Director, Division of Cardiology for George Washington University Hospital, who also spoke at the press conference. He likened wireless monitoring to automatic insulin pumps, which automatically take blood sugar readings, and adjust insulin levels accordingly, rather than requiring patients to take a glucose reading, record it and track it.
Editor's Note: Read Katz's take on mobile technology's role in reducing readmissions in the new FierceMobileHealthcare eBook "Telehealth Monitoring & Mobile Tech: Improving Outcomes, Reducing Readmissions"
George Washington already is trialing wireless remote monitoring of patients in emergency response vehicles, among other projects, Katz noted. But the creation of special spectrum bands will allow hospitals to push "the frontier of mHealth," to allow continuous monitoring of conditions such as chronic lung disease, asthma and hypertension, as well as powering medication reminder technologies to help patients adhere to treatment plans, he said.
To that end, the university already is creating an mHealth working group that includes medical, engineering and other departments to consult on the issue, Katz noted.
To learn more:
- read this one-pager about MBAN from the news conference
- here are Genachowski's prepared remarks
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The Medical Group Management Association (MGMA) has asked the Centers for Medicare & Medicaid Services (CMS) to delay the reporting and hardship exemption deadline in CMS' e-prescribing program from June 30 to Dec. 31, 2012. Under current regulations, eligible providers who fail to show that they wrote at least 10 prescriptions electronically by June 30 will have their Medicare payments trimmed 1.5 percent next year.
MGMA also would like CMS to reduce the burden on practices by allowing eligible professionals who attest to Meaningful Use to meet CMS' e-prescribing and Physician Quality Reporting System (PQRS) requirements automatically.
In a letter to CMS Acting Administrator Marilyn Tavenner, MGMA CEO Susan Turney said that her members have had difficulty understanding how to avoid e-prescribing penalties because the requirements and time frames change each year. For example, last year, providers had until Nov. 8 to apply for hardship exemptions, but this year they must do so by June 30.
Besides extending the compliance deadline, MGMA asked CMS to:
The American Medical Association (AMA) has also pushed back hard against CMS' e-prescribing regulations. Just two weeks ago, while reminding physicians about the June 30 deadline, AMA President Cecil Wilson said doctors were not being given enough time to comply with the requirements. Last year, the AMA and 91 specialty societies criticized CMS' proposed rules, saying there was insufficient time for physicians to avoid the 2012 penalty. This year, some physicians were penalized despite having applied for hardship exemptions by last year's deadline.
To learn more:
- read the MGMA letter
- see the AMA announcement
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Teleradiologist Richard Abramson says there is wide variability in the practice, a problem the profession must address, he writes in the May issue of Radiology.
Now at Vanderbilt University School of Medicine, Abramson spent more than two years at a large teleradiology practice, where he held 30 state medical licenses, served more than 400 different hospital institutions and rendered more than 50,000 preliminary interpretations for sites throughout the United States.
During that time, he found alarming differences in how often patients were scanned and for what reasons, and variations in image quality, in how practices used the information, in follow-up recommendations and in information exchange with emergency department physicians. The industry has a unique opportunity to "biopsy" current practice, he writes.
He found that different sites had vastly different protocols for complaints such as trauma and headache, for instance.
"I see this as a problem affecting not only quality of care, but also our ability as radiologists to position ourselves as information technology experts within larger healthcare systems," he says in an interview with AuntMinnie.com. As we enter the era of accountable care organizations, radiologists are going to have to assert leadership in these nonclinical areas to avoid even further marginalization and commoditization, and we need to start by getting our own house in order."
However, in research from Thomas Jefferson University in Philadelphia and Northwestern University in Chicago, radiologists rated themselves as less knowledgeable than other physicians about imaging costs, medical malpractice, healthcare policy and quality assurance, Diagnostic Imaging reports.
At AuntMinnie.com, Abramson said the feedback he's gotten from his article has validated the issues he raised, but ultimately has been discouraging in the picture it paints of the state of practice.
American Telemedicine Association CEO Jonathan Linkous recently cited outsourced radiology services as being so prevalent they "may be the first form of telemedicine that becomes a true standard of care."
Meanwhile, Dr. Paul J. Chang, medical director of enterprise imaging at University of Chicago Hospitals, recently spoke on the growing commoditization of radiology, referring to the growing number of "Ebay for radiology" sites offering imaging services online.
"We have to have the emphasis on the value proposition," he said, according to HealthImaging. "Everything we do, when it comes to radiology or imaging IT in the enterprise, has to directly result in measurable improvements in either efficiency, quality, safety, outcomes--in other words, value."
To learn more:
- read the Radiology article
- read the AuntMinnie.com interview
- read the HealthImaging article
- read the Diagnostic Imaging article
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The top four search engines all provide "rich" health and medical information, but none of them stand out as the best, according to a new study published in the Journal of Medical Internet Research.
The researchers, from the University of Missouri and China, compared the top four search engines--Google, Bing, Ask.com and Yahoo!--for usability and search validity. They noted that most people use just one search engine when conducting research on a health-related topic, and then view the websites only on the first page of the search. The researchers wondered if this was the best way to obtain information.
The study used volunteers to search and score the four search engines and the websites provided in the searches for information on breast cancer, using various keywords.
The study found that all four search engines were helpful, but they each had a different focus. Google and Bing were more advanced than the other two. Google had the best search validity in terms of whether a website could be opened. Bing scored highest for usefulness. For all of the engines, there was "significant room for improvement."
"We suggest that search engine users explore multiple search engines to search different types of health information and medical knowledge for their own needs and get a professional consultation if necessary," the authors noted.
Patient online health research has been on the increase and can improve patient care, but has been known to be faulty. Online searches are also increasingly being used by patients to compare provider costs and by physicians to augment their own research.
To learn more:
- here's the study
- check out this article
- read more about patient searches
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Providers are increasingly turning to big tech companies to help their data mining efforts, according to an article at Bloomberg Businessweek.
Vendors such as Microsoft, SAS, IBM and Oracle are giving mounds of data the once-over in an analytics industry that generated more than $30 billion last year, according to research firm IDC. That figure is expected to grow to $33.6 billion in 2012--and healthcare is a leading customer.
The article gives some enticing examples.
For example, a hospital in Washington, D.C., called in Microsoft to help look at readmission rates--the data helped pinpoint the infected room.
And a hospital system in central Texas asked IBM to help pore through doctor's notes and other unstructured data to help find ways to lower readmission rates for congestive heart failure patients. It found two big predictors of readmissions: lack of an emotional support network and a bulging jugular vein. Staff hadn't identified the latter as a risk factor.
The practice of data-mining, however, raises concerns. Hospitals have been criticized for mining patient data as a means to market to the most lucrative patients, for example. And data mining only exacerbates the concerns of patient advocates such as Deborah Peel, founder of Patient Privacy Rights, who recently told Forbes that people will avoid seeing doctors if they feel their information isn't secure.
Although federal law requires a patient's consent to release certain health information, there is an exemption for activities that fall under "quality improvement," the article points out. And the use of analytics makes hospitals eligible for federal funds as part of Meaningful Use, fueling adoption.
The Office of the National Coordinator is listening, though, urging medical practices to hire a privacy and security officer to protect patient data, as FierceHealthIT reported this week.
Meanwhile, the rise of health information exchanges means there will be even more data to fuel analytics.
"As federal incentives drive the adoption of electronic health record technology in the U.S., we will quickly move into the post-EHR era where the value of patient data is not what is locked in an EHR data silo, but the cumulative patient data that resides in the community HIE network," John Moore, founder and managing partner of Chilmark Research, said in a recent report on the HIE market.
And a survey by research firm KLAS found half of the 137 healthcare organizations polled plan to update their business intelligence systems in the next three years, looking to add predictive analytics, data modeling, forecasting and trending to better use their data.
To learn more:
- read the Bloomberg Businessweek article
- see the Forbes article
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Clinical initiatives and consumer engagement are at the forefront of the latest expansion within the Office of the National Coordinator for Health IT. The organization created two new offices--the Office of the Chief Medical Officer and the Office of Consumer eHealth--according to ONC head Farzad Mostashari's Health IT Buzz blog post this week. The Office of the Chief Medical Officer will deal with any activities that have clinical implications, which include safety implementations, Meaningful Use policy development and development of quality metrics, Mostashari said. The Office of Consumer eHealth, has been spun off from the Office of Policy and Planning, and will focus on activities such as patient-focused challenges. The changes, according to Mostashari, will help ONC keep its "'eyes on the prize" of better, safer healthcare through health IT." Post
The Chartered Institute for IT (BCS) signed a Memorandum of Understanding with the Healthcare Information and Management Systems Society (HIMSS) in order to collaborate on a project that aims to introduce HIMSS Analytics ‘Electronic Medical Records Adoption Model’(EMRAM)SM to the UK.
3 - Description:This development was announced on 2 May 2012 by Matthew Swindells, Chair of BCS Health, during the opening plenary at Health Informatics Congress 2012, the annual plenary conference of BCS. Mr Swindells explained: “We’re delighted to be working with HIMSS Analytics Europe on this project. We believe information and technology are crucial to the challenge of transforming our healthcare service. The HIMSS Analytics EMRAM model will enable hospitals to measure their progress in the implementation of health IT and benchmark themselves against the rest of the NHS and internationally. This is particularly important as the NHS moves from the top down direction of NHS Connecting for Health to local decision-making. As the Chartered Institute for IT, we believe that through the expertise of our members and partnerships such as this one, we can help support and enable the NHS to deal with the challenges and changes that it is experiencing as it embraces information technology.”
BCS will work with HIMSS Analytics Europe and a number of organisations to test the EMRAM model for suitability in the UK and assist with any modifications that are required. A number of hospitals, including the acute and mental health sectors, are being recruited to assist. BCS Health and HIMSS Analytics Europe are establishing a steering committee to ensure the smooth running of the project. It consists of key health informatics and healthcare professionals.
Mr Readman, Chief Information Officer (CIO) at Wirral University Teaching Hospital Foundation Trust, said, “I am pleased to support BCS and HIMSS Analytics in their efforts to bring EMRAM into the UK. As the CIO for a hospital that has made great efforts to digitise healthcare over many years, I look forward to the opportunity to measure our progress against an external benchmark and am confident that this will inspire us to try even harder to be one of the best in Europe.”
H. Stephen Lieber, President and Chief Executive Officer (CEO) at HIMSS adds: “The EMR Adoption Model and its underlying database provide healthcare organisations, governments, and other decision makers with critical information about the adoption and use of information technology. Globally, we find a significant correlation between stages of IT adoption and improvement in patient care metrics; through this project we will bring new knowledge to the table in support of continuous patient care improvement in the UK.”
Currently, HIMSS Analytics collects data from hospitals and other healthcare delivery organisations, from 25 countries worldwide. EMRAM is an eight stage model (Stages 0 to 7) which classifies an institution’s level of IT adoption. Thus far, 68 Stage 7 hospitals have been identified globally. A Stage 7 is a full digitised, virtually paperless environment with a broad range of interoperability and data exchange capabilities with other organisations.
Further information:
4 - Domain: eHealth 5 - Topic: Electronic health records Hospital information systems Policy 7 - Country: United Kingdom 9 - Source URL: http://www.healthtechwire.com/bcs-the-chartered-institute-for-it/bcs-and-himss-analytics-europe-to-collaborate-on-emr-adoption-model-project-3121/ 12 - Tags: interoperability Data Exchange EMR Adoption Model 13 - Sector: Healthcare