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Podcast: Carrie Handley on patient empowerment with an iPad

Did you happen to catch my story in MobiHealthNews on Thursday about Carrie Handley, the IT consultant-turned-cancer patient? She got frustrated with first a misdiagnosis and then the hassle of lugging around a binder full of paper records that she had to go to multiple sites to collect to assure continuity of care during her treatment and surgeries. So Handley digitized all her records.

Initially, she transported the information on a USB drive, but that got lost in a doctor’s lab coat. Then, her son brought over an iPad. The tablet provided the right balance of portability and shareability. In this interview, Handley, a resident of Waterloo, Ontario (you know, the home of BlackBerry maker Research in Motion), describes the process and shares her thoughts in general on mobility in healthcare.

We wouldn’t have connected if she hadn’t read my tribute to my dad last month. After reading Handley’s story in the e-mail she sent me, I knew we had to do this podcast to help spread the idea that communication can help foster the kind of patient-centric care that eluded my dad, that initially eluded her and that probably eludes millions of people every year.

This Sunday is Father’s Day. I miss my dad terribly. But I take comfort in knowing that I’m doing a small part to raise awareness of multiple system atrophy (MSA) — the rare neurodegenerative disease that killed him — and perhaps advancing the cause of patient safety ever so slightly.

Podcast details: Interview with health IT consultant and cancer survivor Carrie Handley about mobility in healthcare. MP3, mono, 128 kbps, 26.7 MB. Running time 29:13.

June 14, 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.

Health reform is so much more than insurance

The headline above shouldn’t surprise regular readers or anyone who knows me. I’ve been saying for a couple of years to anyone who asks me about “Obamacare” or any other aspect of healthcare reform—and many people who haven’t asked—that the public debate and media coverage have been about insurance reform, not care reform, and health insurance is not the same thing as healthcare. I’ve publicly chided the national media, too.

Maybe that is changing. Last month, attorney Philip K. Howard, chairman of advocacy group Common Good (an organization working to “fill the substance void in the 2012 election by offering new solutions to fix broken government”), wrote in The Atlantic that no matter what the Supreme Court does with the Patient Protection and Affordable Care Act, healthcare still will remain inefficient and expensive. “The Affordable Care Act, aka Obamacare, strives for universal coverage. While it encourages pilots for more efficient delivery systems, the overall effect is to exacerbate the unaffordability of American health care. In this sense, the upcoming Supreme Court decision on constitutionality is just a side skirmish,” Howard said.

In other words, as I’ve been arguing for two years, the insurance expansion of this supposed comprehensive “healthcare reform” legislation is simply throwing more money at the same problem. Having insurance doesn’t assure you good care, nor will it by itself even reduce overall costs. It just shifts costs. There was more reform in the HITECH section of the 2009 American Recovery and Reinvestment Act, in the form of the $27 billion incentive program for “meaningful use” of electronic health records than there is in the part of the ACA being widely debated in this election year.

That’s why, as I pointed out Friday, I was happy to see that investigative journalism organization ProPublica has started a Facebook community for people to share stories of patient harm. And today, the New York Times discussed actual healthcare quality in one of its Sunday editorials (h/t Jane Sarasohn-Kahn). The Times highlighted efforts at Virginia Mason Medical Center in Seattle, Cincinnati Children’s Hospital Medical Center and hospital alliance Premier, saying, “It is a measure of how dysfunctional the system has become that these successful experiments — based on medical sense, sound research and efficiencies — seem so revolutionary.” Indeed.

By the way, my recent, controversial post arguing that faxing should be considered malpractice isn’t a new thought I’ve had. I just rediscovered my January 2011 commentary in Columbia Journalism Review about media coverage of telephone-based “telemedicine.” I ended the piece by advising fellow journalists to “start asking the health-care organizations you cover why they still rely on old-fashioned telephones and fax machines.” Malpractice or not, legal or not, it’s more than a decade into the 21st century, yet we still view healthcare through a 20th-century lens.

Or, as I also like to say, it’s quality, stupid.

June 3, 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.

Facebook community for reporting patient harm

Kudos to investigative journalism organization ProPublica (yes, some journalists still have integrity today) — and a hat tip to HealthLeaders for bringing it to my attention — for setting up a Facebook community for people to report stories of patient harm. I’ve just shared the story of my dad’s torturous final month. I’m glad that a news organization with wide reach beyond the healthcare and technology industries cares about real stories, not distractions related to insurance coverage and partisan politics.

The group now has 661 members. There really should be 1,000 times as many. Please join and share your own stories, then help get the word out about the poor state of U.S. hospital care. (Note that I only accept Facebook friend requests from people I know personally.)

June 1, 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.

NPR examines hospital quality problem

I knew my dad was not alone in experiencing poor hospital care. Thousands of people are harmed in hospitals every week. Yet, some politicians and pundits still insist America has the “best healthcare in the world.”

Just this morning, NPR helped dispel this myth with a report on the myriad problems with U.S. healthcare—including the quality problem. Read and listen here. And share with your friends both inside and outside the healthcare industry. Share my dad’s story. Share your own stories. Let’s make this priority No. 1. Too many people die and suffer unnecessarily  in this country.

May 21, 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.

Faxing should be malpractice

As you undoubtedly know by now, I am now officially all about patient safety. (Thanks, by the way, for all the support in the wake of my father’s untimely death.) That’s why I was so upset to read a friend’s recent Facebook status update: “So I discovered the real reason why I was in the hospital last week (and not generally feeling well for the past 4.5 months). My doctor’s office faxed a prescription to my mail order pharmacy that was 2x the dose I was expecting.”

In case anyone has forgotten, fax is technology from the late 1980s and early ’90s. It is now 2012. I cannot remember the last time someone asked me if I had a fax number. Yet, inexplicably, this obsolete means of transmitting low-res images—images, not computable data—remains perfectly acceptable in healthcare.

Here’s a radical proposal: medical societies and state medical pharmacy boards should prohibit the use of faxes. Medical errors related to faxed documents should be considered malpractice. Period.

May 20, 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.

Poor healthcare quality hits home

My dad, who already was dealing with a serious health issue, was hospitalized a week ago with what turned out was a urinary-tract infection. That cleared with antibiotics in a couple of days, but then he developed a fever, so he could not be released. While we were waiting for that to subside, he developed a hospital-acquired infection, namely pneumonia. He’s still in the hospital and the hospital is still able to bill Medicare for all these extra days — plus the physical therapy he will get in a rehab center that the hospital owns once he’s discharged because being in bed for a week is a serious setback to his original condition.

If anyone thinks the U.S. has the “best healthcare in the world” and that good insurance will get you good care, think again. Please pass this link around and share your own stories in the comments section so we can help spread the truth about quality deficiencies and perverse financial incentives.

April 22, 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.

Sen. Whitehouse, make some more noise, please

I have railed more often than I can count against politicians and the national media for misleading or at least failing to inform the public on what health reform is all about. For me, it was quite refreshing to see an interview in the Washington Post with Sen. Sheldon Whitehouse (D-R.I.), attempting to shed some light on the parts of reform that have nothing to do with insurance.

“The Affordable Care Act is mostly known as an insurance expansion, expected to extend coverage to more than 30 million Americans,” started the post by Sarah Kliff. “But … a big chunk of the law is dedicated something arguably more ambitious: an overhaul of the American business model for medicine. ‘This is a very significant piece of the bill that has received virtually no attention because it’s so non-controversial,’ Sen. Sheldon Whitehouse (D-R.I.) told me in a recent interview.”

On Thursday, Whitehouse released a 52-page document outlining what he sees as the 47 changes the Patient Protection and Affordable Care Act is making to how care is delivered. That doesn’t even count the reforms in the HITECH section of the American Recovery and Reinvestment Act from a year earlier, by the way.

Health IT, of course, is a big part of reform.”The HITECH Act took important steps to restructure financial incentives to shift the pattern of health IT adoption. The HITECH Act’s Medicare and Medicaid incentive payments are encouraging doctors and hospitals to adopt and “meaningfully use” certified
electronic health records,” Whitehouse noted.

Also from that report:

Health information technology (IT) will radically transform the health care industry, and is the essential, underlying framework for health care delivery system reform. The ACA’s payment reforms, pilot projects, and other delivery system reforms are built with the expectation of having IT-enabled providers. In particular, the shift to new models of care, like ACOs, will rely heavily on information exchange and reporting quality outcomes. Indeed, the formation of ACOs is contingent on having providers “online” to transfer information and patient records, and report quality measures.

Whitehouse did discuss ACOs with the Washington Post, but there’s a reason why the interview appears on a page called the WonkBlog. This stuff is too complicated and wonky for the average person.

What isn’t complicated is explaining that throwing more money at a broken system, as the insurance expansion does, will not lower the cost of care. It also isn’t complicated to explain that tens of thousands of Americans needlessly die each year due to medical errors or low-quality care. Yet, more than a few defenders of the ACA have said that the insurance mandate would help guarantee “quality care” for millions.

Wrong!

The insurance expansion guarantees insurance coverage. It does not guarantee quality care. Whoever wins Friday’s Mega Millions drawing wouldn’t necessarily be able to buy quality care, either. Nor would Bill Gates, for that matter. You can’t get quality care unless you’re willing to address the causes of errors and adverse events. Period.

Sen. Whitehouse seems to understand that. I doubt too many other members of Congress do, despite the fact that a former colleague, the late Rep. John Murtha (D-Pa.), who had the “Cadillac” coverage so many people covet, died as a result of a medical error.

March 30, 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.

EHR disadvantages disappear from Wikipedia

According to the Health Care Renewal blog, which chronicles some of the myriad problems in American healthcare, editors of the Wikipedia page for “electronic health record” keep deleting or changing the section about EHR disadvantages. Drexel University medical informatics professor Scot Silverstein, M.D., who contributes to the Health Care Renewal blog, says that the following text has been removed from the Wikipedia page in the past week: Read more..

January 29, 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.

Health Wonk Review, unadorned but chock full of health IT

In the latest edition of Health Wonk Review, hosted by Chris Fleming on the estimable Health Affairs blog, there’s not much in the way of a fun theme, but that’s OK. It’s still full of some good perspectives, including more than the usual share of health IT.

My post that aggregated a bunch of tweets from the Health 2.0 Conference made the biweekly blog carnival, as did a much longer-form way of covering the event, David Harlow’s series of video interviews. Harlow got 18 different people on camera, including HHS gurus Todd Park and Dr. Farzad Mostashari.

Elsewhere, patient advocate Jessie Gruman,  president and founder of the Center for Advancing Health, took on mobile apps as a means of changing patient behavior, Tom Lynch of the Workers’ Comp Insider blog discussed predictive modeling in healthcare claims administration and Healthcare Economist blog author Jason Shafrin wonders why patients don’t seem to care much about healthcare quality.

In particular, I invite you to share Shafrin’s short post, if for nothing more than a conversation starter.

October 13, 2011 I Written By

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