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Apr 13 2015

World on fire. Film at 11.

By healthcare industry, media commentary, politics, technology

I wasn’t lucky enough to get a press pass, or a scholarship, to HIMSS15 this year. Given events of the last few days, I’m really sorry I can’t be on the ground in Chicago for what feels like a grassroots revolt brewing in protest of the Centers for Medicare and Medicaid Services (CMS) dropping an announcement, on Friday late afternoon, that they were thinking of gutting the rules for patient access to their own records under the “Meaningful Use” criteria of healthcare reform. You know, the one where we spent something like $6B of taxpayer money. Which was supposed to make care easier, safer, cheaper.

There are phases and stages of Meaningful Use. We’re in MU2 right now. Originally, by the end of the MU2 period (running through 2020), a practice or facility had to demonstrate that 5% of the people/patients cared for in that practice or facility viewed, downloaded, or transmitted their personal health information (PHI) to a 3rd party. That was the criteria for a healthcare provider seeking stimulus $$ for EHR technology deployment [updating: and Medicare reimbursement].

Here’s the “new” rule (clue train: instead of 5%, it’s 1. No, not 1%, one patient) being proposed:

mu2-gutting

I know, right? Friday afternoon, everyone in the industry is heading to Chicago for HIMSS15, who’ll care? Sorry, CMS, but you are totally busted. Here’s data access rights activist Regina Holliday, who’s at HIMSS and whose hair is now on fire.

Speaking of “hair on fire” … so’s mine.

Seems like the Empire is trying to strike back. Or the Capitol (the big-money healthcare industry players who drop money on K Street lobbyists like snowflakes in Boston in the winter of 2014) thinks it’s run over all the Districts (patients, caregivers, families) and has little to fear from our powerlessness. I think they’re wrong. Dead wrong. And they’re about to find out just *how* wrong. Expert, activist patients, along with savvy clinical folks whose hearts are truly in their work, are now assembled in District 13.

My take can be summed up in this image [updated on Tuesday, April 14]:

bluebutton mockingjay mashup image

We are coming for your silos. Because it’s OUR data, and OUR lives.

Mar 25 2015

Report from the front lines: Technology, engagement, and killing paternalism

By healthcare industry, politics, technology

I’ve spent a good portion of the last two months on the healthcare equivalent of the political stump – called the “rubber chicken circuit” in political circles. Thankfully, there was no actual rubber chicken served during these sojourns, although there was the incident of the seductive breakfast sausage, followed by my solo re-enactment (off stage) of the bridal salon scenes from the movie “Bridesmaids.” I will draw the veil of charity (and gratitude for travel expense coverage) over the details of that incident, and just advise all of you to stick to fruit, cereal, or bagels at conference breakfasts. ‘Nuff said.

My original editorial calendar plan was to turn this into a series of posts, broken down by focus into technology and clinical categories. However, since a big part of my goal in standing on the barricades at the gates of the healthcare castle, waving my digital pikestaff in service of system transformation, is breaking down silos … well, go grab a sandwich, and a beverage. This is gon’ be a long one.

HIMSS Patient Engagement Summit

In early February, I headed to Orlando for the first Health Information and Management Systems Society (HIMSS) Patient Engagement Summit. I was asked to participate in two panel discussions, one titled “Patient Perspectives: The State of Engagement,” the other “Can We Talk? The Evolving Physician-Patient Relationship.” Both were moderated by Dr. Patricia Salber, the bright mind behind The Doctor Weighs In.

Being a person with no letters after her name (like Elizabeth Holmes [update: she’s trash, so redacted] and Steve Jobs, I’m a college dropout), I’m used to showing up at healthcare industry events and being seen as something of a unicorn fairy princess. That’s how people commonly called “patients” are usually viewed in industry settings outside the actual point of care. Healthcare professionals/executives are so used to seeing us as revenue units, or data points, or out cold on a surgical table, but not as walking/talking/thinking humans, they can do a spit-take when meeting an official “patient” at an industry conference. Which is fun if they have a mouthful of coffee, but I haven’t seen anyone actually get sprayed yet.

All kidding aside, I really have to hand it to HIMSS for their uptake speed on seeing people/patients as valuable voices in the conversation about healthcare IT and quality improvement. In the time since they first noticed (in 2009, I believe) that people like ePatient Dave deBronkart, Regina Holliday, and others might have something to add to the discussion, they’ve made a visible effort to include people/patient voices in their national programs. Of course, had they not invited patients to present at their Patient Engagement Summit, they would have been line for a public [digital] beating … and so there we were: Amy Gleason, Kym Martin, Alicia Staley, and yours truly, ready to grab a mic and speak some truth.

A favorite tweet during the opening keynote by Dr. Kyra Bobinet, a friend of mine via our mutual membership in the Stanford MedX community:

I see patient engagement as healthcare that nourishes the people it serves, and also as a nutrient for the healthcare delivery system itself. Healthcare itself will get better, in its body (clinicians and all other folks who work inside the system) and in its spirit (its culture), with authentic connection – engagement – with the human community who seeks its help in maintaining or regaining good health.

Both panels went well, and the audience seemed to be both awake, and interested in what we had to say. For those of us who have been working the user – PATIENT – side of healthcare transformation, it’s frustrating that we’re still saying the same things to professional audiences that we’ve been saying for (in my case) close to 20 years now. But those of us on the patient side of this change management rodeo can sense a paradigm shift, and are starting to believe that we’re seeing transformation slowly deploy across the healthcare system. As the oft-repeated William Gibson quote goes, “The future is here, it’s just not evenly distributed.”

 

Patients ARE engaged. We’re working our butts off to get medical professionals and healthcare execs on the same page as us. Like the old story goes, when it comes to bacon and eggs, the chicken’s involved, but the pig’s fully committed. In the bacon-and-eggs of healthcare, patients are the bacon. We’re all in, and we know more, in many ways, about how to fix the system than the “professionals” do. Alicia Staley said, again, what she says consistently to healthcare audiences, “You need a Chief Patient Officer on your board.” So … get one. And we all need to be wary of blaring headlines, which can be very misleading when it comes to the real health risks we all face:

HIMSS Privacy + Security Forum

 

In early March, I winged my way out to San Diego, one of my several hometowns (growing up a Navy kid means you get more than one) for the HIMSS Privacy + Security Forum. I was a panelist for the last session of the conference, which I knew meant that many of the attendees would already be in the TSA screening line at Lindbergh Field, but I was going to share my thoughts with whomever stuck around, even if it was just the busboys. Our session was titled “What Matters Most: Patient Perspectives on Privacy & Security,” and what happened at the end of our panel was something I had hoped for – several of the folks who had stuck around come up to us and said, “that panel should have opened this conference!”

When it comes to IT security, the healthcare industry is rightly terrified, given the epic bitch-slap that a HIPAA fine can be ($1.5 million dollars per incident) – and the irony of the Anthem data breach affecting up to 8.8 million of their members making headlines the week before this conference was not lost on me … or any of the other folks at the HIMSS Forum meeting. Yet it’s critical to note that access, by patients and by clinicians, particularly at the point of care, to all the relevant data necessary to deliver the right care at the right time to the right patient, is still an undelivered promise across the health IT landscape. So don’t be Mordac, Dilbert’s Preventer of Information Services – we have enough of him. He’s like a freakin’ virus.

Hilariously, the day before I traveled to San Diego, I had to threaten a HIPAA complaint to get my records transferred from one provider to another. I had been asking for TWO MONTHS for the rads practice where I had gotten my mammograms 2009 through 2011 (twice a year in 2009 and 2010, given my Cancer Year of 2008) to send my scans and reports to my current mammography radiologist, and it took a voicemail with a HIPAA violation threat to get someone to call me back. My records are so damn secure that NO ONE can get them, except for “Robert in the basement” at [rhymes with … Bon Secours]. It felt like I was talking to Central Services in the Terry Gilliam movie “Brazil.” And people wonder why I have a QR code linked to my health history tattooed on my sternum …

 

Lown Institute RightCare conference

Speaking of right care/right time/right patient, two days after the HIMSS Privacy + Security Forum wrapped, the Lown Institute’s RightCare 2015 conference kicked off just down the street.

Dr. Bernard Lown is the cardiologist who invented the cardiac defibrillator in the 1960s, and who won the Nobel Peace Prize in 1985 for his part in creating the International Physicians for the Prevention of Nuclear War. The Lown Institute, founded to continue the work on healthcare and human rights that Dr. Lown has devoted his life to, states as its mission “We seek to catalyze a grassroots movement for transforming healthcare systems and improving the health of communities.”

In short, this event made me feel like I’d taken a trip in the Wayback Machine to my college days 1970-1973 in the Haight Ashbury in San Francisco … without the LSD, but with all the fire of my youth, mixed with the wealth of mature knowledge I’ve managed to velcro on to myself in the decades since. The real beauty part? There were lots of young people in the room, who are the age today that I was 40 years ago (in my early twenties), speaking up for the human rights of the people served by the healthcare system. The ones commonly called “patients.”

I got a chance at a scholarship to #Lown2015 after meeting Shannon Brownlee during our work on the Patient & Family Engagement Roadmap, and our attendance at Dartmouth’s SIIPC14 “informed patient choice” conference last year. She tipped me off that scholarships were available, I applied, and got lucky by snagging one. Doubly lucky, because it put me in the room while some of the leading voices on the clinical side of medicine called out the industry they work in for being slow to fully enfranchise the people they serve – patients – by being too driven by money, and not driven enough by their own humanity. A sampling:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

And, because it just ain’t a movement unless this gets thrown down:

The bedrock message here? The democratization of knowledge that’s been delivered thanks to the Information Age has lifted the scales from the eyes of the early-adopter people/patients who are on to what healthcare is now, and what it must become to remain sustainable, or even relevant. Patients are coming up off their knees. The occupants of the ivory towers of medicine must descend from their aeries, or risk being flung from the parapets. Like winter …

Feb 24 2015

Shared decision making, please

By e-patients, healthcare industry, media commentary, technology

You’ve heard me before on the subject of shared decision making (SDM). Short version: I’m an advocate for partnership in medical care. Partnership that includes the values, outcome goals, and cost considerations of THE. PATIENT. Which means shared decision making.

My buddies over at Software Advice have just published the results of a survey* they did in collaboration with the Mayo Clinic’s Knowledge and Evaluation Research (KER) Unit that took a deep dive into what’s happening in the real world with SDM, and what patients who are exposed to the process think of it.

The key findings:

  1. A majority of patients (68 percent) say they would prefer to make collaborative decisions about treatment options with their healthcare provider.
  2. Forty percent of patients say they have participated in SDM before, and 21 percent have done so within the past year.
  3. Most patients surveyed say that SDM improves their satisfaction (89 percent) and makes them feel more involved in the care they receive (87 percent).
  4. Nearly half (41 percent) of patients report that they would be “much more likely” to adhere to a treatment plan developed using SDM.
  5. 47 percent of patients would be “extremely” or “very likely” to switch to a provider whose practice offers SDM.

If you click through to the full article in the 2nd graf, you’ll see a number of graphs and charts reporting on patients’ responses to questions about provider choice and treatment protocol adherence – one of my least favorite words, but it’s a favorite of pharma and healthcare system peeps, so there it is. The pie chart that stood out for me was this one:

Likelihood to Switch to SDM Provider

11-likelihood-switch

 

For the math-challenged, 80% of the patients surveyed were moderately, very, or extremely likely to switch to a healthcare provider who practices SDM. Physicians and other clinicians who interact with patients at the point of care need to digest this: fully informing patients of the treatment options available to them, and working with patients to craft a treatment plan TOGETHER, is a survival strategy for the clinician. Ignore SDM principles at the peril of your continued professional relevance.

This is particularly timely given my upcoming attendance at the Lown Institute’s Road to RightCare: Engage, Organize, Transform conference in San Diego March 8 through March 11. I’ll be hearing from researchers, clinical teams, patient voices, and policy wonks on how to create a right-care healthcare system whose bedrock is shared decision making.

Also, the recent JAMA Oncology articles on the myth of the demanding patient, which myth has formed some of the institutional-side (translation: dinosaur providers) pushback against the wide adoption of patient input on their treatment (in other words: SDM) in the U.S. and elsewhere, are starting to knock down the walls that have kept SDM from becoming the standard medical practice model it should be.

“Nothing about me, without me” is a rallying cry of the participatory medicine movement. Shared decision making is, I believe, part of an overall civil rights issue, since patients who aren’t asked their goals and preferences for treatment are being given care that isn’t their choice. A real hurdle for SDM is going to be the inevitable end-of-life conversation – life is, after all, 100% fatal – that we all have to have, unless we die suddenly in a plane crash or car wreck.

Where are you on the SDM spectrum? Does your doctor talk you through all your options, or just write you a prescription or send you for a scan? “Shut up and do as I say” medicine needs to be consigned to the scrapheap of history. Agree? Disagree? Share your thoughts in the comments.

*Source: Practice Management systems consultancy Software Advice

Feb 18 2015

EHR technology: Match.com without a happy ending?

By EHR, health records, healthcare industry, media commentary, medical records, technology

My last two posts explored the question of the doctor/patient relationship in the context of romantic relationships. The first one asked if we were anywhere close to getting engaged, the second looked at the possibility that the whole enchilada needed some intervention-level relationship counseling.

In the couple of weeks since, I’ve had some interesting digital and face to face conversations about digital communication tools, patient engagement, and the doctor/patient relationship that have led me to ask if the crop of EHR (Electronic Health Record) systems in current use across the land, as part of Obamacare’s drive toward healthcare system quality, safety, and access (or, as I like to put it, to the tune of “Old McDonald Had a Farm,” EHR, HIE, E-I-E-I-O!), aren’t analogous to online dating sites like Match.com.

healthcare cupid imageWhich leads me to the observation that the EHR tech I see – all of it, from Epic to Practice Fusion to athenahealth to NextGen to Cerner – can in many ways be compared to Match.com. You put in personal data – name, personal details, outcome goals – and the technology (supposedly) helps you toward your goal. With EHR, that’s best-health, with Match.com, it’s a romantic relationship, but both take data input, digitize it, and claim to provide solutions based on that input.

And I have to say that my observed success ratio on both EHR technology and online dating is similar. As in: mostly it feels like “failure to launch.”

So … go grab a cup of coffee, or a bottle of water. This will be a lengthy look at that question, but I promise to bring it home with at least a couple of laughs along with my pointed observations.

The leading lights of healthcare IT haven’t made the doctor-patient relationship any easier to create and maintain than Match.com has for romatic relationships. For every success story, there are hundreds (thousands? millions?) of examples of bitter frustration. With the billions (yes, with a B) spent on buying and implementing EHR systems, the phrase “meaningful use” – which was supposed to be the demonstration of clinical and patient communication tools to enable better quality healthcare – has become a punchline.

A couple of weeks ago, I shared a post from The Health Care Blog by Bob Wachter, an interview with Beth Israel Deaconess Medical Center CIO John Halamka, on my social media channels. In it, Halamka said that only 3% of patients wanted their health records kept locked up tight behind virtual doors, so he had to lock up the data of the other 97% to keep the 3% happy. When I shared that post on my LinkedIn profile, it opened a conversation about that statement, such as what the heck the underlying facts to support it were.

“It’s interesting that the 3% figure was not referenced. I am not in the health informatics field, nor do I have time to do an in depth literature review for discussion. However, a quick Google search yields several informative studies. One small study (n=30) of patient preferences found that patients wanted granularity in terms of what they want to share, or not share. No participant wanted to universally share ALL information. Another study (n=105) reported that 1 in 2 patients hid medical information from their own doctors.”

In other words, is that 3%/97% statement the equivalent of creating convenient details about yourself on an online dating profile? When I asked a few people in the e-patient zone about this, I heard this story about how a major health records system in Boston [spoiler alert: Halamka’s IT system] basically spewed garbage instead of useful patient health history data when they opened the data taps to the now-dead Google Health. So, apparently it’s exactly like confabulating facts on an online dating profile. Also, some additional reading led me to a story on CIO about an epic system failure, also in Boston [spoiler alert: I’ll let you figure out what/why], that tied up an entire hospital network’s system for five long days in November 2002.

Back to my metaphor, of EHR tech being analogous to online dating. If the communication partner you’re talking to says they’re a 42 year old architect in Cambridge, or the lab that’s just completed the path report on your biopsy, can you trust what they’re saying? Is there accessible, verifiable information to support the claim? Can you believe what you’re seeing? Can you even SEE what’s really there?

Both of those scenarios rely on trust, and a sense of security. And the ability to actually SEE. WHAT’S. GOING. ON. As Mordac, the “preventer of information services” in the Dilbert comic strip, says, “Security is more important than usability. In a perfect world, no one would be able to use anything.”

I had the opportunity last week to be part of the Health Information and Management Systems Society (HIMSS)’s first Patient Engagement Summit in Orlando. Yep, more acronyms – E-I-E-I-O. The two panels I was part of talked about the current state of the doctor/patient relationship, and the overall event was all about how technology can either support, or hinder, that relationship. The crazy part is that both the clinical side of healthcare – doctors, nurses, researchers – and the patient side – the rest of us – are desperately determined to get engaged (with each other), get married (create the best possible outcomes), and live happily ever after (better community health for EVERYBODY!).

The trouble is, I’m afraid, that the tools that are supposed to be the grease on the rails to making that happen – the digital communication systems that hold our care data – are set up by Mordac. Screaming headlines about stuff like the recent Anthem breach are like screaming headlines about sharp rises in sexual assault figures – they’re a real buzz-kill for trust between possible relationship partners.

If you actually know me, you know I’ve taken a rather extreme step toward fostering relationship clarity, doctor/patient-wise. It’s the image that is my Twitter avatar (click that link to see it), and it is a real 3×3″ QR code tattooed on my chest. I can’t say that it has any effect on my dating profile (I bailed on online dating years ago), but it has made many of my healthcare-relationship interactions … interesting.

Can I, or any of us, trust health IT and EHRs to help make our healthcare relationships happy and successful? Or are we stuck in the slough of despond that is Match.com?

Aug 26 2014

The State of Health Information Exchange: Benefits and Challenges

By EHR, health records, healthcare industry, technology

This is a guest post by TechnologyAdvice.com writer Jesse Jacobsen. TechnologyAdvice.com is based in Nashville, TN, and their stated mission is to provide valuable insight to business technology buyers, while creating connections with the products and vendors that best meet those buyers’ needs. Their site is a goldmine of industry-specific intel on current software and IT products and trends … and they have a dedicated healthcare tech content channel!

graphic of tablet with EKGAccording to the 2013 HIMSS Analytics Report, 73 percent of respondents indicated they were participating in health information exchange (HIE), with 57 percent only participating in a single HIE. Of the practices in an HIE, 52 percent reported experiencing benefits with better access to patient information, 20 percent experience promoted patient safety, and 12 percent said HIE led to time savings among clinicians. Only 16 percent reported no benefits.

As evidenced above, HIEs can be effective tools for improved practice operations, but that doesn’t mean the system is foolproof. In the same report from HIMSS, the top challenges faced by hospitals included other organizations not sharing enough data (49 percent), lack of necessary staff (44 percent) and resources (40 percent), and privacy concerns (39 percent).

As government mandates continue to push provider use of electronic medical records (EMRs) and HIEs, more practices are beginning to consider if it’s time to participate in a health information exchange. The following will look at some of the current benefits from HIE participation and address some current challenges.

Benefits

Better Patient Information

HIEs provide physicians with easier access to patient information, especially on a state level, such as the recently implemented HIE in Florida. Currently, accessing patient information can be a costly and inefficient process, with too much reliance on faxing and email. Utilizing an information exchange makes gaining patient data a quick process with far fewer expenses.

Reduced Imaging Duplication

By reducing duplication of diagnostic tests, physicians can heavily reduce expenses and increase practice efficiency. According to a study from the University of Michigan, around 20 percent of all scans performed by emergency department clinicians were considered repeats. When hospitals used HIEs, patients were 59 percent less likely to have a redundant CT scan, 44 percent less likely to get an additional ultrasound, and 67 percent less likely to have a repeated chest X-ray. Eliminating such duplication can result in significant cost savings for providers, patients, and payers.

Improved Care and Reduced Errors

Simply put, when doctors have quick and easy access to patient records, they can make informed and effective treatment decisions. Without access to this information, physicians are basing diagnosis and treatment decisions on a narrow view of their patient’s health history. With quick access to a longitudinal view of a patient’s health history, physicians can see current and past prescriptions, previous diagnoses, reactions to medications, and any other pertinent information. This information is essential when prescribing medication to ensure that new prescriptions won’t adversely interact with current medication that patients are taking. Between 26 and 32 percent of total medication errors are caused by administrative errors. These are potentially fatal mistakes that can easily be prevented with proper HIE implementation.

Use in Emergencies

For patients in emergency situations, time is of the essence. Being able to access patient information from HIEs helps clinicians act quickly and responsibly. In 2009, the average time spent being treated in emergency rooms was four hours and seven minutes, an increase of 27 minutes since 2002. Increased treatment time in the ER results in increased wait times, which on average took six hours in 2009. ER doctors can decrease patient interaction and wait times with quick and easy access to patient records from HIEs, including information on allergies, past treatments, pre-existing conditions, and applicable test results.

In addition, emergency departments can use HIEs to reduce expenses and unnecessary admissions. According to a study conducted by Weill Cornell Medical College, the chances of a patient being admitted to the hospital was 30 percent lower when the HIE was used, leading to estimated annual savings of $357,000. Decreasing unnecessary admissions also results in shorter wait times.

Challenges

Security Concerns

A report published by the Bipartisan Policy Center found that 25 percent of clinicians cited privacy and liability concerns as barriers to participating in health information exchanges.  The argument behind these security concerns is logically sound; if HIE affiliates have increased ease of access to patient information, who else might have this increased access as well? How can we be sure that sensitive patient and practice information is secure? After all, HIPAA violations are quite expensive.

While this concern is justified, most HIE affiliates recognize this potential shortcoming and have established a wide array of policies to prevent any information leaks. For example, when electronic requests for patient information from a healthcare provider are made from an unknown provider, most HIEs refuse to provide any data. As these platforms for data exchange continue to advance and increase in adoption, more policies and safeguards will be put into place to ensure the security of patient files.

Inconsistent or Insufficient Information

Many healthcare providers who have already integrated HIEs into their practice complain that insufficient patient information and inconsistent filing methods are a huge hindrance to HIE success. Data fragmentation is already an issue for the healthcare system as a whole, costing up to $226 billion per year.

Unfortunately, this is a challenge will take time and continual effort to alleviate. As more hospitals and practices begin sharing data, and as the government groups continue to establish detailed, reasonable standards for patient records, data silos will be broken down.

Insufficient Funds

For many providers, developing HIE networks makes very little sense strictly as a business investment. According to a study from the Robert Wood Johnson Foundation, 74 percent of respondents listed developing a sustainable business model as a moderate or substantial barrier to HIE deployment, in addition to a high level of concern about a lack of funding (66 percent).

To tackle this issue, some practices are joining cloud-based HIEs, which charge monthly fees, alleviating the heavy upfront costs typically incurred by other systems. These pay-as-you-go systems can become more expensive than their counterparts however when used for a long period of time. Additionally, transferring patient information through the cloud presents a potential security concern. But, for cash-strapped practices seeking a means to effectively exchange data, a cloud-based community could be the answer.

Lack of Infrastructure

Similar to lacking proper funding, many healthcare providers list a lack of infrastructure as a major challenge with HIE. A survey from Doctors Helping Doctors Transform Health Care found that 71 percent of respondents listed lack of infrastructure as a primary challenge. Adding infrastructure is not only expensive because the infrastructure itself is pricey, but also because the labor and resources required to outfit new systems are expensive as well.

Again, selecting a cloud-based solution can alleviate many infrastructure shortcomings. Cloud systems require very little on premise infrastructure to gain access, and accordingly require minimal labor investment to setup. While building the proper infrastructure to maintain a normal HIE is recommended, cloud-based options are growing in popularity and accessibility, making it a viable solution for smaller practices and struggling health care providers.

HIEs are far from perfect, but the information and resources they provide can add value to practices everywhere. Unfortunately, many of the improvements that need to happen to HIEs simply require time and commitment from a large volume of healthcare providers. The technology is there, and eventually the commitment and investment from practices will be as well.

Aug 08 2014

GM recalls are bad. Medical device recalls are worse.

By healthcare industry, technology

It’s bad enough when your GM SUV turns into a rolling fire hazard.

Imagine needing, and getting, a hysterectomy, only to discover that the surgical procedure itself turned you into an advanced stage cancer patient?

USPTO image of morcellator

Giant sucking sound. And cancer risk.

That’s exactly what’s been going on since power morcellators became common in laparoscopic uterine surgery to remove fibroids. In morcellation, the fibroid tissue, and/or the entire uterus, is ground up prior to being sucked out of the abdominal cavity. I’m sure that you, and I, can do the biological math on this question, “What if that fibroid is cancerous?” Yep, that would mean that previously encapsulated cancer cells would be set free to run rampant through the aircraft – the patient’s body – spreading its metastatic self far and wide.

Why didn’t anyone at the FDA do that bio-math? Turns out that when these devices were approved in the late ’90s, since other similar devices were already on the market, no clinical trials were ever done. Here’s a graf from the NY Times back in April, talking about this very thing:

“Morcellators were allowed onto the market in the 1990s without the usual clinical trials in patients because they were similar to other devices that had already been approved — a process that critics of the agency say can lead to safety problems like the one that has now been recognized.” tweet

I’ve known about morcellators for only about 10 months – which is surprising, considering my interest in medical quality and patient safety – but my eyes were opened by my buddy Gilles Frydman, the man who started the Association of Cancer Online Resources (ACOR), which gets credit for helping some friends of mine, including ePatient Dave himself, save their own lives by giving them the information they needed to fully participate in their own care. Gilles is also behind SmartPatients.com, but I digress. Gilles tipped me off to the morcellation controversy when we were both at a meeting at a major pharma company – irony! – and asked me to add my voice to the “Morcellator, begone!” chorus. Which I did.

I was delighted to see stories in Medscape and the Wall Street Journal about the FDA warning. But I was not delighted at the fact that it was simply a warning, and an end to sales, not a full-on recall. Because that means that morcellators are still out there in surgical suites and ORs across the globe, putting women’s lives at risk.

One bright spot in this morcellated mess arrived in my inbox last Monday (Aug. 4, 2014) from American Recall Center. I saw the send address, and wondered if my car was getting recalled again. When I opened the email, I discovered that American Recall Center is all and only about medical device and pharma recalls – what a great idea, and how double-delighted I am to learn of its existence.

Here are the facts about morcellation, and its unintended outcome in gynecological surgery:

  • Hysterectomy is the 2nd most common surgery among women in the United States
  • By age 70, one out of three American women will have had a hysterectomy
  • 90% of these surgeries are done to remove fibroids (non-cancerous tumors found in the uterus)
  • The average life span following accidental morcellation of sarcoma is only 24-36 months (editor’s note: WHOA)
  • Only 15% of women who have leiomyosarcoma (LMS) that has spread (stage 4) will be alive after 5 years
  • Women with sarcoma who are morcellated are about 4 times more likely to die from sarcoma than if they had not been morcellated

If you’d like to know more, visit the ARC’s power morcellator page. If you’ve had a hysterectomy or myomectomy where a morcellator was used, you can get a claim review, gratis, from ARC.

Add your voice to the “Morcellator, begone!” chorus – let’s not leave it at “warning,” let’s get these power tools from hell removed from medical practice, shall we?

Addendum: Turns out there’s a page on the ARC site that actually talks about GM recalls. So my opening comment turns out to be not *just* snarky.

Nov 18 2013

Healthcare.gov and me: I win!

By healthcare industry, politics, technology

Unless you’ve been living under a rock since October 1, you’ve heard that Healthcare.gov, the site where Americans can shop for health insurance, had a rocky start in life. OK, it was an epic mess.

I was one of the people who was eager to jump on the site on October 1, since I haven’t had health insurance since I completed cancer treatment in 2008. That cancer diagnosis and treatment put me in the pre-existing condition pile, which put renewal insurance premiums for my individual coverage at an eye-popping level. You can read the details on that here. On October 1, I hopped on my Mac, and surfed over to Healthcare.gov … and had the same experience everyone else seemed to be having:

healthcare.gov error message image

image credit: forbes.com

That continued over the following seven days, with me developing a nice little flat spot on my forehead from head/desk-ing my way through many attempts per day at getting past the first step of creating a profile on the site. Even when I had completed that process of creating a profile, every time the site announced “Success! Click here to continue.” I clicked “there” and … got a blank page.

On October 8, I realized that I, and the site’s developers, might have missed something. I was using Google Chrome, my default browser, and the dominant browser across the web. Could it be that the dim bulbs that built the Frankenstein that is the Healthcare.gov site optimized the site only for native browsers? I opened Safari, and discovered that yes, they were indeed that dim, because even though the site loaded at the speed of a slug on Quaaludes, it did load. And “Success!” allowed me to continue the enrollment process. No blank pages.

I re-enacted scenes from 1995, when I would log on to Netscape to download email on my dial-up connection: open the page, hit “go,” and then make coffee. When I returned with a hot cup of joe, I’d repeat the process on each subsequent page, working in another tab while the site loaded the next page in the process. I managed to complete the entire enrollment process, save for the last “pull the trigger” step of hitting the ENROLL button, because I wanted to make sure I had the money for my first month’s premium available. Which turned out to be unnecessary, since when I did hit the ENROLL button, I got a message saying that my selected insurer would be contacting me about billing. That conversation happened a few days ago, and I’ve paid my first month’s premium.

As of January 1, 2014, I’ll have health insurance again for the first time since December 31, 2008. WIN.

Here is the upside of what I saw in my voyage through Healthcare.gov:

  • Even though my state is one that announced it “hated Obamacare, would not be building its own marketplace, and we hate Obamacare,” there was a wide array of plans offered to me.
  • I could compare plans side-by-side.
  • Premiums were a wide range, with some surprises: the lowest-premium Bronze Plan had 0% co-insurance (I wasn’t on the hook for a percentage of cost on covered services), with higher premium plans tagged with 25% co-insurance.

Here’s the thing that made me go “WTF?”:

  • Only the Bronze Plans are HSA-friendly. HSA=Health Savings Account, essentially 401(k)s for healthcare. Individuals can sock away $3,300/year (in 2014) of pre-tax money in a dedicated savings account for healthcare costs, with people over 55 allowed to sock away an additional $1,000 for a total of $4,300 in 2014. Since all the Bronze Plans I was offered had deductibles of $5,500 or more, with the plan I selected carrying a $6,350 deductible, it would seem reasonable – fairer? – to allow consumers to fund their HSAs annually to match the level of their deductible.

On the whole, this is a big win for me, and other uninsured people who fell into the “pre-existing condition” bucket. By the way, just being female was considered a pre-existing condition until the Affordable Care Act passed. In spite of the views of Fox News talking heads (all male, of course), gender equality needs to exist in all phases of public life, including health insurance.

Bottom line? I win.

Oct 29 2013

Healthcare Talk: Patients with Power

By healthcare industry, technology

I had the chance to participate in a Hangout on Air with Kathi Browne, who is the founder/moderator of the Google+ Healthcare Talk community. If you’re on G+ and in the healthcare industry, that community is one you want to join – lots of discussion on topics from healthcare policy to social media to patient safety to care quality. It’s invitation-only – if you’d like to join, hit the G+ link above and ask Kathi to add you to the community.

Last night’s (Monday, Oct. 28, 2013) Hangout on Air was a conversation with Bill Guthrie, CEO of Patients with Power, a new web-based platform for shared decision-making for cancer patients and their oncology teams that’s in beta at UCSF’s lung cancer oncology unit and also as a survival-planning tool at Cornell-Weill/New York Presbyterian’s ob-gyn onco unit.

Decision-making for cancer patients – shared, or not – is a firehose. Patients with Power does what its name promises, it gives patients access to the information they need to make an informed decision, information that’s solidly based in evidence-based medicine since it’s based wholly on National Comprehensive Cancer Network (NCCN) guidelines for cancer treatment. Bill has given me a demo of the tool, and it’s superb. He also did a walk-though last night. Give a watch/listen: //www.youtube.com/embed/FPTIjDwirDI

Sep 11 2013

#HCSM Review 36: Exploring healthcare costs, access, e-patients as experts

By healthcare industry, media commentary, technology

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Welcome to the MightyCasey–hosted edition of the HealthWorksCollective #HCSM Review, a peer-reviewed compendium of timely, on-topic writing about healthcare from across the web.

Last Friday, I put out a call for posts about healthcare costs and/or health insurance innovation for the HCSM community. Here’s the brain candy that flew over the MightyCaseyMedia transom:

First up: an examination of STD occurrence alongside STD testing costs in the New York metro area from ClearHealthCosts.com (@chcosts), written by Sherry Mazzocchi. This is a deep dive into the incidence of STDs across New York City, with snapshots of what consumers actually pay for STD testing at a number of facilities across the region. Runs from $0 (for members of a subscription medical practice) to $600 for women who visit a Westchester County practice. Like Uwe Reinhardt has said for years, healthcare pricing is chaos behind a veil of secrecy.

For patients looking to pierce that veil and direct-pay for their care, ClearHealthCosts’ founder Jeanne Pinder offers up this post – New ways of paying: Cutting out the middleman. Seems like everybody’s looking for a better way to hold down health costs. In a number of cases, that means patient and provider are getting together directly, without the middleman (the insurance company). You could start asking, “How much is that?” and acting on the answer.

With Oct. 1 and the dawn of the ACA’s new health insurance marketplaces, Jeanne Pinder shares What it means to you: Oct. 1 and buying health insurance. Maybe you avoid the topic of health insurance, but you can’t any longer. If you’re not covered by employer insurance, Medicare or Medicaid, you will need to know things about buying insurance (or choosing not to buy it). Her post offers some actionable advice on how to figure out what the marketplace means to you.

From one of my favorite places, Costs of Care (@CostsofCare), comes a post by David Marcovitz titled “A Routine Denial,” about how it feels to have an expensive test declined by your insurer after it’s been done. If you’ve ever been on the receiving end of one of these notices, you know that it feels anything but routine. After the appeals process. David discovered just how chaotic healthcare pricing is. A great read.

Like David, Brave Bosom founder Andrea Downing (@BraveBosom) discovered that she had a genetic predisposition to a disease. In her case, it was BRCA, the genetic mutation that increases risk for breast cancer. Andrea is a leader in the young “previvor” community, and offers up this post on what healthcare reform means for her, for her community, and for other people who have potential destructive dynamite in their DNA. Genetic testing and counseling is a terrific resource; worrying how it might impact your insurance coverage shouldn’t have to be a consideration when you’re making a decision about your health.

ePatient Dave deBronkart (@ePatientDave) is a world-famous (really) patient activist. He’s written two books, and spoken at conferences across the globe. His post “Ratty boxers: what it means to really, truly have no money” resonated powerfully for me, since all e-patient experts face the same challenge: patients aren’t yet seen as experts worthy of remuneration by the healthcare industry. Dave has helped move the needle on that – here’s hoping that his message spreads into the hearts and minds of organizations who are still expecting patients to pay for the privilege of speaking to audiences who need to know what we know: how to make healthcare more human-friendly.

Alan Brewington (@abrewi3010) blogs at PainTalks.com – he’s a guy with chronic arthritis from some rather epic sports injuries. He sent along a post on the pending health insurance exchanges from the front lines in a Red State: Idaho. Titled “Health Insurance Exchange, Idaho, Arthritis, and Me,” Alan’s post walks the reader through an exploration of the new health insurance exchange marketplace, figuring out what kind of coverage is available at what premium cost. As a chronic pain patient, Alan knows more about the ins and outs of health insurance than the average guy his age, and makes some good observations about what it will take for healthcare reform to work.

Closing our cavalcade of #HCSM awesome, here’s a post from Carolyn Thomas at MyHeartSisters.com (@HeartSisters) on how online communities help patients cope, and give them the power to move on. “Discover. Join. Leave.” is a great journey through the life cycle of online patient groups. Some come and stay, others arrive looking for specific help, all make a contribution when they can. Peer-to-peer healthcare is a web, just like … the web. Carolyn tells a great troll-taming story, too – another terrific read.

If you’d like to participate in the HealthWorksCollective #HCSM Review – click this link to look at the schedule, and find out how to get on the list. Thanks for reading, and I’d love to hear your thoughts in the comments!

Jun 23 2013

Stetho-Snopes: Time for some rigorous myth-busting in healthcare?

By healthcare industry, politics, technology

It was recently revealed that an Excel error contributed to the European fiscal crisis, and a continuing global economic recession/depression. Paul Krugman called the revelation the Excel Depression in the NY Times.  Certainly lives are at stake when the success or failure of large economies are at risk, but not nearly as many lives as are at stake every day given the lack of transparency (and even, in some cases, plain truth) in bioscience research and medical outcomes reporting.

Ben Goldacre gave a barn-burning TED talk, “Battling Bad Science,” in 2011. He gave another one in 2012 in which he called the data manipulation in scientific research the “cancer at the core of evidence-based medicine.” His point? We cannot make a meaningful decision in the absence of ALL the data.

Tim Berners-Lee, the man who invented the actually-useful-to-humans WWW part of the Internet, has consistently called for raw data – ALL the raw data – NOW.

Paul Levy, the former CEO of Beth Israel Deaconess Hospital, recently blogged about the failure of the Journal of Pediatric Surgery to reveal, in a report on a surgery for sunken-chest deformity, a widely-reported death of a teenage boy after said surgery, even though that boy’s case is used as an example of avoidable medical error in safety bootcamps for medical interns and residents. Boggles the mind, doesn’t it?

Even if the data is fully reported, the PR geeks who write up the announcement of results might get that report 100% wrong. Witness the recent contretemps over a University of Chicago study on patient engagement, shared decision-making, and healthcare cost control. A full outline of that mess, by ePatient Dave deBronkart in Forbes, will give you 411 on that story. The Cliff’s Notes: it was a post-discharge survey, not a full study; it measured attitudes, not outcomes; and the press release was sent out on a holiday weekend, ensuring both pick up (slow news cycle) and lack of follow up.

Given the general public’s lack of understanding of science, the scarcity of journos who can interpret same for said general public, and the scale-thumbing going on in bioscience research, what’s to be done to reverse this disease-mongering and full-on prevarication (look it up) trend?

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Stetho-Snopes

How about a Snopes.com for medicine? We could call it … Stetho-Snopes. There’s certainly enough interest in the subject on the part of people and organizations. The challenge is to take all the small villages of interest across the globe and give them a repository for what they find, and what they can debunk.

Ben Goldacre is walking his own talk with an effort called AllTrials, a petition that’s demanding open data from all sources of medical research. Organizations like the Robert Wood Johnson Foundation are working on making medicine and healthcare more transparent and accessible for patients. The Society for Participatory Medicine‘s membership is committed to the same mission: transparency and collaboration across the continuum of care.

How about we all band together and make RAW DATA NOW a reality in medicine? GIMME MY DaM DATA. Now.

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