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On a personal note: Celebrity chef joins MSA cause

This is not related to health IT, so if that’s all you’re looking for, I won’t be offended if you skip this post—unless you’re involved in wearable sensors, in which case, there’s something near the end that may be of interest.

No, this post is about multiple system atrophy, the rare, progressive, always-fatal neurodegenerative disorder that killed my father in 2012. While my dad was fighting this evil disease, more than a few physicians he saw had either never heard of MSA or had never seen a case of it. One marked it down in the medical record as “MS,” as in multiple sclerosis, a completely different condition.

Recently, MSA awareness got a shot in the arm in the form of some bittersweet news: Las Vegas-based celebrity chef Kerry Simon, who has been called the “rock n’ roll chef” by Rolling Stone magazine and probably is best known nationally for beating Cat Cora on “Iron Chef America” in 2005, told the world he had this illness. He went public in December in an interview with his friend Robin Leach — yes, that Robin Leach.

Rather than go into seclusion as his body starts to wither away, Simon has chosen to become the public face of the disease. He just started a new organization called Fight MSA, and has a high-profile fundraisers planned Thursday in Las Vegas. Simon is friends with a lot of rock stars, and these are big-dollar events with big names, including entertainment from Sammy Hagar, Slash, Alice Cooper and Vince Neil of Motley Crue, and food by a long roster of famous chefs from around the country. If you can make it, tickets are still available.

The same night, his restaurant in his home town of Chicago, Chuck’s: A Kerry Simon Kitchen, is holding a smaller benefit. It just so happens that I’m returning from the HIMSS conference in Orlando, Fla., that evening, flying into Midway Airport. Chuck’s is at 224 N. Michigan Ave., in the Hard Rock Hotel, which is right on the way home for me from Midway. If all goes well, I plan on being there around 8 pm, and I invite you to join me. Unlike the $500/$1,000 Vegas event, the Chicago fundraiser will only set you back the cost of a hamburger or a cocktail.

(If you happen to find yourself at one of Simon’s restaurants in Las Vegas, Chicago, Los Angeles, Atlantic City, N.J., or Punta Cana, Dominican Republic, please put in a good word about his fight against MSA.)

I’ve been trying to sell this story to national and local mainstream and foodie media, so far, to no avail, so I’m posting it here. If you have any leads for me, please let me know.

Also on the MSA front, perhaps the foremost researcher of this disease in the world, Dr. Gregor Wenning of the Medical University of Innbruck, Austria, last year published the first medical textbook dedicated to understanding MSA. Wenning just flew 18 hours each way to meet with Simon. If you’re a neurologist or other physician treating MSA patients, you can buy a copy here.

Just last week, the U.S. Food and Drug Administration approved a drug called Northera (droxidopa) for treatment of neurogenic orthostatic hypotension (NOH), a sudden drop in blood pressure when standing up that occasionally is a symptom of MSA, Parkinson’s disease, pure autonomic failure and even diabetic neuropathy. My dad had at least a couple of fainting spells due to NOH.

This summer, I am planning a huge undertaking to raise awareness this summer, a bike tour from Chicago to Washington, D.C. My dad lived in the area, and there just happens to be an MSA-related conference there in July that I may use as my finish line. That’s 800 miles, for those of you keeping score at home, and I think I can do it in less than two weeks. There may be an opportunity to ride a segment or two with me as well, particularly the final leg through Maryland. I expect to have some details to announce during March, which happens to be MSA Awareness Month.

I will be putting up a separate blog soon to share details of my tour and, hopefully, updates en route. (You know, quantified self folks, I might be able to make use of some of your technology if I’m going to be on a bike for 6-8 hours a day for 10-14 days. Just saying.)

For more information about the disease and the research underway, I’ll refer you to the Multiple System Atrophy Coalition in the U.S. and Canada, and the Multiple System Atrophy Trust in the U.K. There are support groups in other countries, and I’m happy to help you track them down if you ask.

February 21, 2014 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

Podcast: Telehealth for Parkinson’s care

Two months ago, I interviewed neurologist Ray Dorsey, M.D., co-director of the Center for Human Experimental Therapeutics at the University of Rochester, for a story I wrote based on a study he led. He had a lot of interesting things to say and, unlike so many other physicians, was aware of multiple system atrophy, the disease that killed my dad in 2012, so I decided to have him on for a podcast to describe how he is using off-the-shelf telehealth technology to expand access to care, improve patient satisfaction and reduce costs.

The study focused on Parkinson’s disease, as does a new study Dorsey is leading through http://connect.parkinson.org, but Dorsey sees this technology as promising for treating autism and Alzheimer’s disease as well.

We, of course, discussed cross-state licensure holding back wider use of remote care, a subject that is very much in the news right now. In fact, Health Data Management just published a story I wrote about, in part, the launch of the Alliance for Connected Care. This group, headed by three former senators and including CVS Caremark, Walgreens, Verizon Communications, WellPoint, Welch Allyn, Cardinal Health and telehealth companies HealthSpot, Teladoc, Doctor on Demand, MDLive and GE-Intel Care Innovations, is advocating for regulatory changes to expand remote care.


Podcast details: Interview with University of Rochester neurologist Ray Dorsey, M.D. MP3, mono, 128 kbps, 16.3 MB. Running time 17:54.

1:30         Telehealth to expand access to care for people with chronic diseases

2:00         Shocking numbers about Medicare beneficiaries with Parkinson’s who don’t have a regular neurologist

2:45         Lack of reimbursement for telehealth even though it costs substantially less than in-person visits

3:38         Incentives to provide care in “high-cost, relatively unsafe environments”

3:58         Insurers “are never going to lead the way” in terms of innovation

4:40         Previous study funded by PatientsLikeMe, the Verizon Foundation and Medtronic funded his study

5:40         Findings of that study, and advantages of remote care

6:25         Telehealth to increase access to care, improve patient satisfaction and reduce costs

6:50         New study on “virtual house calls” about to launch in collaboration with Patient-Centered Outcomes Research Institute (PCORI)

7:37         Low-cost, off-the-shelf technology

9:45         Registering for PCORI study

10:40       Cross-state licensure issues, including new Alliance for Connected Care

12:10       Parameters and goals for new Connect.Parkinson study

13:35       How technology is creating care opportunities for “anyone, anywhere”

14:10       Dealing with the newly insured and with special-needs patients

15:50       Savings from preventing falls and other dangerous conditions

16:10       Enrollment for Connect.Parkinson

16:42       About the Center for Human Experimental Therapeutics

 

February 19, 2014 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

My HIMSS will be all about quality and patient safety

As regular readers might already know, 2012 was a transformative year in my life, and mostly not in a good way. I ended the year on a high note, taking a character-building six-day, 400-mile bike tour through the mountains, desert and coastline of Southern California that brought rain, mud, cold, more climbing than my poor legs could ever hope to endure in the Midwest, some harrowing descents and even a hail storm. But the final leg from Oceanside to San Diego felt triumphant, like I was cruising down the Champs-Élysées during the last stage of the Tour de France, save the stop at the original Rubio’s fish taco stand about five miles from the finish.

But the months before that were difficult. My grandmother passed away at the end of November at the ripe old age of 93, but at least she lived a long, full life and got to see all of her grandchildren grow up. The worst part of 2012 was in April and May, when my father endured needless suffering in a poorly run hospital during his last month of life as he lost his courageous but futile battle with an insidious neurodegenerative disorder called multiple system atrophy, or MSA. (On a personal note, March is MSA Awareness Month, and I am raising funds for the newly renamed Multiple System Atrophy Coalition.)

That ordeal changed my whole perspective, as you may have noticed in my writing since then. No longer do I care about the financial machinations of healthcare such as electronic transactions, revenue-cycle management, the new HIPAA omnibus rule or reasons why healthcare facilities aren’t ready to switch to ICD-10 coding. Nor am I much interested in those who believe it’s more worthwhile to take the Medicare penalties starting in 2015 for not achieving “meaningful use” than to put the time and money into adopting electronic health records. I’m not interested in lists of “best hospitals” or “best doctors” based solely on reputation. I am sick of the excuses for why healthcare can’t fix its broken processes.

And don’t get me started on those opposed to reform because they somehow believe that the U.S. has the “best healthcare in the world.” We don’t. We simply have the most expensive, least efficient healthcare in the world, and it’s really dangerous in many cases.

No, I am dedicated to bringing news about efforts to improve patient safety and reduce medical errors. Yes, we need to bring costs down and increase access to care, too, but we can make a big dent on those fronts by creating incentives to do the right thing instead of doing the easy thing. Accountable care and bundled payments seem like they’re steps in the right direction, though the jury remains out. All the recent questioning about whether meaningful use has had its intended effect and even whether current EHR systems are safe also makes me optimistic that people are starting to care about quality.

Keep that in mind as you pitch me for the upcoming HIMSS conference. Also keep in mind that I have two distinct audiences: CIOs read InformationWeek Healthcare, while a broad mix of innovators, consultants and healthcare and IT professionals keep up with my work at MobiHealthNews. For the latter, I’m interested in mobile tools for doctors and on the consumerization of health IT.

I’m not doing a whole lot of feature writing at the moment, so I’d like to see and hear things I can relate in a 500-word story. Contract wins don’t really interest me since there are far too many of them to report on. Mergers and acquisitions as well as venture investments matter to MobiHealthNews but not so much to InformationWeek. And remember, I see through the hype. I want substance. Policy insights are good. Case studies are better, as long as we’re talking about quality and safety. Think care coordination and health information exchange for example, but not necessarily the technical workings behind the scenes.

And, as always, I tend to find a lot more interesting things happening in the educational sessions than in that zoo known as the exhibit hall. I’m there for the conference, not the “show.”

Many of you already have sent your pitches. I expect to get to them no later than this weekend, and I’ll respond in the order I’ve received them. Thank you kindly for your patience.

February 13, 2013 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

A dubious honor from Health Wonk Review

For the very first time, I captured the top spot on the biweekly Health Wonk Review blog carnival, this time hosted by Dr. Jaan Sidorov of the Disease Management Care Blog. Unfortunately, I had to endure my dad’s untimely death after a miserable hospital experience in order to write the piece in question. But if it brings more traffic to that post and, more importantly, more awareness of multiple system atrophy (MSA) and the problem of poorly coordinated care and broken processes in hospitals, I’ll take it.

Since you’re here primarily for health IT, I’ll point you to a couple of relevant items that Sidorov summarizes. In a post actually written back in February, Martin Gaynor, chairman of the Health Care Cost Institute, discusses the organization on the Wing of Zock (the name is explained here) blog. The institute is aggregating claims information from the likes of Aetna, Humana, Kaiser Permanente, UnitedHealthcare and CMS to provide researchers with rich data sets related to healthcare costs and utilization.

“At its most basic, HCCI was formed because a better understanding of health spending can improve the quality of care and save money. If we generate information that makes a difference, then we will be a success,” Gaynor says.

Also, consultant Joanna Relth makes it known on the Healthcare Talent Transformation blog that she is no fan of ICD-10. “I’m sure that the intent of making this massive change to the codes is to improve the accuracy of diagnosis coding so providers will bill more accurately and insurance companies will pay providers and insureds in a more timely fashion. Seriously?? Did anyone ask a learning professional about how large a list is reasonable and at what point does the number of data points become impossible to follow?” she wonders in what comes off a little as an anti-government screed.

But I prefer to end this post on a happy note. In the comment section, Relth links to a video from EHR vendor Nuesoft Technologies that parodies Jay-Z’s “99 Problems.” Enjoy.

May 25, 2012 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

Mark Versel, 1944-2012

My father passed away late last Friday night from 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, balance and such, and with physical and speech therapy, 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 sciatica 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.

UPDATE, April 2013: If you would like to make a donation to MSA support and research, please visit our family’s fundraising page, which is helping the Multiple System Atrophy Coalition. Thank you.

May 17, 2012 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.