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My first portal experience

Yes, after all these years of writing about EMRs, EHRs, PHRs, patient portals and the like, I have had my first real personal experience with a patient portal, courtesy of my internist.

He still has a small practice, with four other physicians, including one fresh out of residency. Those small practices are a dying breed, but this doctor is changing with the times, too. He recently offered a concierge option for a few hundred patients. I declined because I don’t need to reach him that urgently.

The portal has been in place for a couple of years, and I may have logged in once or twice before to set up an account, but didn’t really do anything other than look around. This time, prompted by an e-mail informing me of a new URL, I logged in and checked my medication list. I remembered that another doctor had changed the dosage of one of my medications a while back, so I fired off a secure message informing this practice of the change. (It was a new URL presumably because the EHR vendor formerly known as Sage Healthcare adopted the Vitera Healthcare Solutions name a year ago and was switching its customers to a common, white-labeled portal.)

I also looked at some of my test results from a year and a half ago just to confirm that everything was more or less OK then, though I did see one abnormality with my HDL cholesterol. I last went for a physical in March 2011, about a month after I ungracefully cut my face open on a bathtub in Orlando during HIMSS11, so I was probably due. This practice lets patients request appointments — not actually choose open slots — online, so I sent my request. Tonight, about 24 hours later, I got my confirmation, and I’ll be seeing the doc in a couple of weeks.

It’s not a perfect system, but it was convenient enough for a night owl like myself who might not remember to call during business hours to make an appointment or simply not want to wait on hold or press a bunch of buttons to navigate a telephone menu. I did not see the Blue Button option to download my record that the federal government is pushing private vendors to adopt, but I’m sure that will be there by the time the practice is ready for “meaningful use” Stage 2 in a year or two. I don’t have a PHR anyway, so I wouldn’t be able to do anything with the data other than print it.

I suppose I should set up an emergency PHR at some point, even though I doubt any hospital or specialist I might get referred to would take the time to download my data from a USB drive or log into someone else’s portal. Untethered PHRs simply don’t fit physician workflow. That might change in MU Stage 2 when providers will have to send electronic discharge statements and patient summaries during transitions of care, but I’m still not convinced a patient-controlled PHR will be the right vehicle for these data transfers.

 

October 31, 2012 I Written By

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Health eVillages is Monday’s AOL ’cause of the day’

Health eVillages, which I am on the advisory board of, has been selected as AOL’s “Cause of the Day” for Monday. That means it’s highlighted on the home page of AOL. If you have an old smartphone you’re not using, donate it to Health eVillages and help save a life. Thanks.

September 17, 2012 I Written By

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Eric Dishman needs a kidney

You all know Eric Dishman. He’s the director of health innovation and policy for Intel’s Digital Health Group, and a regular speaker on the health IT circuit. He did a podcast with me last fall on the topic of connected care management.

You probably haven’t seen him at too many events of late. That’s because he’s very sick and is in need of a kidney transplant. In fact, he’s still seeking a donor, a healthy person with Type O blood. Read this for more information. Let’s see if we can’t crowdsource him a kidney — and a new lease on life.

August 1, 2012 I Written By

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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

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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

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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

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New technology for the 90-plus set

Meet my grandmother.

She is less than two weeks away from her 93rd birthday. She lives alone, in the same apartment she and my grandfather retired to in 1984 (my grandfather died in 2001). Her closest relative is 100 miles away. Her children and her grandchildren all live more than 1,400 miles away.

Her bones are brittle from osteoporosis and osteoarthritis. She is losing her hearing. Her vision has been bad for as long as I’ve known her. She lives on the second floor of a walk-up building, with no elevator.

Last weekend, she had to be hospitalized for a fall she took when the car she was getting out of moved slightly while she was removing something from the back seat. She had had another fall in her home less than two months earlier. She is out of the hospital now, in a rehab facility, where she is supposed to stay for as long as three weeks while she gets physical therapy so she can stand and walk without pain. But what happens after that?

In the past, she has flat-out refused to move to be closer to one of her children because she doesn’t want to deal with winter weather anymore, and, as she says, “This is my home.” She has also said she does not want to go into assisted living or nursing home because she has always been stubbornly independent.

I know this story is not unique to my family. I’m sure many of you have faced similar dilemmas with elderly relatives.

My mom and my aunt have both suggested that my grandma get some sort of “panic button,” more formally known as a personal emergency response system. They were thinking of the old “I’ve fallen and I can’t get up” variety, which requires the user to push the button to summon help. Of course, that does no good if the wearer is unconscious or is disoriented.

I explained, based on my coverage of health IT and wireless health technologies, that there are some new types of personal emergency response devices that are passive, i.e., they can automatically detect a fall and call for help, no matter what condition the user is in. Some more comprehensive systems monitor vital signs and movement.

Most of my family did not know about these options.

When I visited back in December, I showed my grandma videos of a few technologies. She wasn’t interested in anything that looks like a computer or a touch-screen tablet because, frankly, new technology is confusing. I mean, she doesn’t even know how to use her DVD player, and has no interest in learning. Caller ID was a big step for her.

She also did not seem too interested in wearing a vitals monitor, even something as simple as a chest strap. Her heart is fine. While she did survive cancer twice in the past 15 years (!), I am not aware of any chronic ailments other than the arthritis and osteoporosis. There is no Internet access in her home, and she does not have a cell phone. She begrudgingly said that she would be OK with wearing a sort of panic button. I have a feeling she would also agree to have a motion sensor installed in the apartment, but only if the landlord would allow it. (I’m pretty sure the landlord would, and that she was just making excuses.)

So, what would you suggest? Vendors, whatcha got?

I’m not looking for any handouts or freebies here by virtue of the fact that I have this public forum. My family would be willing to pay the regular price for your products and services. But I am going to use my soapbox to do the right thing for my grandma.

January 26, 2012 I Written By

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Help free Warren Weinstein

As you may know, Warren Weinstein, the American kidnapped in Pakistan in August, is a family friend. I posted about him shortly after the kidnapping, but took the post down at the request of the Weinstein family. Now, with the chilling news that he is in the hands of Al-Qaeda, I am being encouraged to spread the word to put pressure on the U.S. government and others who might be able to save him.

Please:

1. Forward this message to your friends who can influence others.
2. Send letters to the editor of influential publications.
3. Write to your government and legislators.

The following is a note from my uncle, to whom Warren is a close friend and mentor:

 

Dear Friend,

A very dear friend of ours, Dr. Warren Weinstein, was brutally kidnapped from his house in Lahore, Pakistan on August 13, 2011, just a few weeks after celebrating his 70th birthday with his family back in Maryland, and just two weeks before he left Pakistan for good. Warren is an exceptionally talented and devoted man and during the five or so years that he was in Pakistan, he did a phenomenal amount of good for the people with whom he worked. Among other things, he used his extensive networking skills to open up new markets for Pakistan’s jewelers and to help increase value-added for Pakistani dairy producers. He spoke Urdu, the language of the people and he fit in to the society, exactly the way an excellent development worker should do. He was all about delivering good things to the people of Pakistan – to the best of his considerable ability.

That he was grabbed from his home – at 3 am during Ramadan, the holy month of fasting (which Warren, an observant Jew who respected others’ religious beliefs, probably was keeping in solidarity with his co-workers) was certainly a callous, cold-blooded and cowardly, if not infidel, act. Given that violence was (apparently) used upon him and his guards also underscores the brutal nature of his abductors. The Pakistani police were and have continued to be impotent in following through on Warren’s kidnapping. The Pakistani government has been absent.

And now, after four long difficult months of waiting, not hearing anything, the cowardly caliph of Al Qaeda comes forward with a valiant declaration, victoriously claiming that he and his henchmen are holding a good and righteous 70 year old man who has dared to try to help others less fortunate than he during his entire career, in fact his entire lifetime. As an American, and as a Jew, Warren believed strongly that by helping others he was doing what was right, and he always did it very well. Accusing Warren of the venal crime of working for USAID, Al-Zawahiri wants the West to give back all the Al Qaeda loyalists in return for Warren.

For those Al Qaeda loyalists, whose work is to destroy, to explode, to obliterate, to assassinate innocent men, women and children, of whatever creed or belief, simply to terrorize, they – so we are told – believe that they do this all in the name of Allah… How can that same Allah condone the work of Warren and the work of the Al Qaida contingent? I suppose that’s why Allah is indeed so wondrous…

In the few days following Al-Zawahiri’s announcement, I have seen NO official US government reaction. That is shameful, given that Warren was doing everything in his power to do good works so that America and USAID would be better-viewed by Pakistanis. Warren and his team were successful at expanding opportunities for Pakistanis’ businesses, using US taxpayers’ money. Perhaps there is some secret mission underway to bring Warren home, but the lack of even basic appreciation for what Warren has done is shocking. The Department of State released some benign diplomatic drivel to suggest that they had communicated with the Government of Pakistan….with whom we have very complex and rapidly deteriorating “relations”…and that they were working to get the hostage freed, or something to that effect. Is that it? Is that all one gets when one has devoted years of service and has the misfortune to be placed in grievous circumstances?

In an earlier incident, a redneck CIA hack who shot Pakistanis to death in some sort of traffic accident which ended in an altercation, claimed self-defense or some such thing, got wonderful treatment and laser-focus from the US government. He was subsequently released and repatriated to the US where he could get into trouble in his own country, and if I recall correctly, did indeed. US funds were used to pay blood money to the victims’ families. But for Warren, a contractor – not a US government direct-hire employee, since the US does not negotiate with terrorists (or so the tale goes), what will the US do for him????

I do not usually agree with the forum that I have cited below this appeal letter. In this case, the author is at least venturing something other than inaction, an alternative to doing nothing or benign business-as-usual phrases.

I ask you to think about Warren and his family and share this with others so that he may brought home as quickly as possible. He has beautiful grandchildren and daughters and a wife who all miss him like he most definitely misses them. And he has friends…lots of friends all over the world, from dozens of countries and with whom he communicates in their languages. If you would be so kind as to ask your Congressional representatives and Senators to get involved, maybe we can break through some of the bureaucratic malaise and get Warren home with his family.

This is a season of hope. Perhaps we can dare to hope that Warren can be set free as quickly as possible.

Thank you for reading this. Help free Warren Weinstein.

Best wishes,
Malcolm Versel

 

from: Family Security Matters
http://www.familysecuritymatters.org/publications/id.10971/pub_detail.asp
December 6, 2011
How Should the U.S. React to the Kidnapping of Warren Weinstein?

Ryan Mauro

On August 13, a 70-year old Jewish-American named Warren Weinstein was kidnapped from his home in Pakistan. Ayman al-Zawahiri has released a tape claiming he is in Al-Qaeda’s custody and his fate will be decided by whether the U.S. gives into his demands. He’s believed to be under the control of Pakistani Taliban commander Tariq Afridi, who operates out of the tribal town of Darra Adam Khel near Peshawar, but there are reportedly no credible leads on Weinstein’s exact location. What is the United States to do?

The first thing the U.S. must do is inform Pakistan that it will be held responsible for Weinstein’s fate. This would not have happened if Pakistan lived up to the same responsibilities that all of the world’s countries are expected to. If there is any intelligence service that can find Weinstein, it’s Pakistan’s ISI intelligence service. Should it fail to do so, Pakistan should receive just as much blame as Al-Qaeda and the Taliban. There are specific, long overdue punishments that Pakistan must face if Weinstein’s life is lost.

The second action that must be taken is to ideologically pressure Al-Qaeda, the Taliban and Pakistan. This is an opportunity to bring attention to the goodness of America and the evil of the Islamist terrorists. Weinstein is not an enemy combatant. He is not even near the age to become a combatant if he wished. He is an aid worker who has devoted his life to helping others, especially Pakistanis. He set up scholarships for students in the tribal areas to study the gem trade. He’s helped improve the dairy market. His job was to develop Pakistan. His story should become known to all Pakistanis as an example of how America is helping them and the terrorists are hurting them.

The U.S. must also use the kidnapping to embarrass Al-Qaeda and the Taliban and to stop them from using it to try to appear strong. The U.S. and its allies must emphasize how cowardly of an act this is and depict it as an act of weakness. The fact that Al-Qaeda and the Taliban has to resort to kidnapping 70-year old aid workers should be used against them.

Muslim governments that covet their ties to the U.S. should be asked to pressure their imams to condemn the act. Again, Weinstein is not an enemy combatant and even some anti-American Islamists will view his kidnapping as uncalled for. Although I do not agree with all of his suggestions, former Egyptian terrorist Tawfik Hamid makes a wise recommendation. He says that Islamic scripture should be used to condemn Weinstein’s captors. It is important that the U.S. do everything it can to stir debate within the Islamic world about such events.

Unfortunately, the odds are not high that Weinstein’s life will be saved and so a response must be prepared should the terrorists kill him.

The U.S. must steal the headline from Al-Qaeda and the Taliban. The world’s headlines should not read, “Al-Qaeda Kills American Hostage.” They must read, “Al-Qaeda Kills American Hostage; U.S. Launches Massive Strikes on Terror Havens.”

When President Obama came into office, he was given a list of 150 terrorist camps inside Pakistan. Some have since been destroyed but plenty remain, along with safehouses, front businesses and other terrorist entities. The U.S. must immediately respond to the announcement of Weinstein’s death with military action that demonstrates our strength, makes terrorists (and those who do business with them, such as the kidnappers who may have sold Weinstein) second-guess the wisdom of their actions and raises the cost to Pakistan for taking the enemy’s side. By doing this, Al-Qaeda will be prevented from having any boost in morale or prestige. His death must be remembered as something that brought misery to Al-Qaeda and its allies, not joy.

The U.S. should also have a strategy that becomes incrementally more aggressive towards Pakistan. If there is any information indicating that Pakistan is protecting Zawahiri or Commander Afridi, it should be released. If a specific ISI operative is tied to them, his assets should be frozen. Further cuts in aid to Pakistan must happen. The target list for the drone campaign should be expanded and U.S. troops in Afghanistan should be permitted to return fire across the border. Our troops deserve to have the threat to their lives minimized and sites used to kill them should not have immunity.

If Pakistan’s behavior does not immediately change, the State Department should reverse its decision to not include the country on its list of “Countries of Particular Concern” for violations of religious freedom. The case of Asia Bibi, a mother who has been sentenced to death for criticizing Islam after converting to Christianity, should be taken up. There should be open discussion in Congress about designating the ISI as a terrorist group, as was done with the Iranian Revolutionary Guards, or at least its S-Wing that is most involved.

Richard Miniter offers some additional ideas. He suggests eliminating our dependency on Pakistan by building a supply route to Afghanistan through India, preferably in secret. Allies in central Asia should be used to airlift supplies. The U.S. can also insist that AT&T and other companies change their business arrangements with Pakistan in order to financially punish the country.

The hard truth is that the U.S. isn’t doing everything in its power to save Warren Weinstein or our soldiers in Afghanistan. Pakistan must be forced to do everything it can to find him and if his life is taken, he deserves to be honored with more than condolences.

Ryan Mauro is the National Security Analyst for Family Security Matters. He is the Founde rof WorldThreats.com, a national security analyst at Christian Action Network, a Strategic Analyst for Wikistrat and a national security commentator for FOX News.

 

Thank you for your attention. And now, back to health IT.

 

December 9, 2011 I Written By

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On assignment, back soon

You’re probably wondering where I’ve been the last few weeks. I’ve got a major assignment due on Nov. 30 — I’m working through Thanksgiving weekend — so blogging has taken a back seat. I’ll be back in a week or so, probably with coverage of the mHealth Summit.

November 26, 2011 I Written By

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