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EHR technology: Match.com without a happy ending?

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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?

Give me your thoughts in the comments …

Stanford MedicineX: Communicating Illness in the Digital Age

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I missed this panel at MedX because I was presenting my own in another room at the same time – I can’t wait to catch the recording on the MedX YouTube channel, but here’s the Storify version from the awesome/amazing Susannah Fox:

Healthcare.gov and me: I win!

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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.

“Patients included.” On ‘roids. In a good way.

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medicinex regina holliday painting

I had the great good fortune of being tagged as an ePatient Scholar for the 2013 edition of Stanford Medicine X. That allowed me to sit at the feet – literally, since the ePatients were the mosh-pit for the three day conference plenary stage – of some of the best and brightest minds in healthcare. And guess what? Many of those best/brightest were … PATIENTS.

patients included logo
(c) Lucien Engelen

MedicineX (a/k/a MedX and #medx) is the uber Patients Included medical conference. It grew from seeds planted at conferences like Health 2.0 and Patients 2.0, for which seeds-to-beautiful-flowers gardener credit goes to Dr. Larry Chu and his team from Stanford Anesthesiology AIM Lab, who seem to prestidigitate rabbits out of hats without breaking a sweat. Or the hats. Or the rabbits.

MedX – in my opinion, at least – trumps every other Patients Included event by not just including patients, but by putting them front and center throughout the program. In fact, I cannot think of a session that I attended that didn’t have someone who was there primarily as a customer of healthcare (commonly called “a patient”) on the platform, presenting or participating in a panel discussion.

My ePatient socks were knocked off from jump thanks to the opening keynote by Michael Seres and Marion O’Connor on “The New Engaged Patient,” which was the morning keynote on Friday. Michael uses his blog as his personal health record, up to and through a lifetime battle with Crohn’s disease that led to his becoming the 11th patient to ever receive a bowel transplant, and only the 6th to survive that transplant experience. Michael is hilarious, and Marion is exactly the sort of caring brainiac any patient would like bedside as s/he battled a life-threatening illness. Here’s the video of their session:

The rest of the day played out as a firehose of ePatient awesome, including the first presenter to bring me to tears: Sara Riggare, a brilliant woman who is, among many other things, an engineer and a Parkinson’s patient. During the panel discussion on “The Self-Tracking Patient,” and my (somewhat sobby) conversation with Sara afterward, was when I fully realized, even though I’d talked about it last year on one of my blogs, that I had been born an ePatient. Well, maybe not born, but them that brung me into the world also brought me to ePatient-cy. I felt my late father, whose Parkinson’s laid him low, and then to rest, over 10 years ago, standing by me as I listened to Sara talk about her own self-tracking and self-advocacy. My dad was a warrior – literally, a US Navy fighter pilot – and brought that warrior spirit to his battle with Parkinson’s. I’d like to think that Big Mike would be proud of the work I do today to bring sense, and sensibility, to the most human of all sciences: medicine. Here’s Sara on the main stage:

The Friday sessions ended with a “What If Healthcare …” panel discussion, conveniently tagged for the Twitter-verse as #whatifhc (click that link for a Symplur transcript of the conversation as it unfolded live). This session is the only one that pressed my buttons in a not-good way, and here’s why: there were a group of white-dude brainiacs, and one not-a-white-dude, on that panel. Don’t get me wrong, I like white dudes. Hell, I’ve married two of ’em (NOT at the same time!). But I found it sort of anachronistic that, as the “dream big” panel on the first day of a Patients Included medical conference on the campus of a major medical school (Stanford Med), the participants on that panel were so very white-dude, with the notable exception of healthcare artist/activist Regina Holliday. Regina herself mentioned the very-not-diverse makeup of the panel during the session. I made the observation on Twitter, as I listened to the panel’s conversation, that healthcare in the US is a great wealth-transfer system … but as a health-transfer system? Not so much. Here’s the first-look video of the session via the MedX YouTube channel:

Saturday opened with something for which I was utterly unprepared: hearing first-hand about the project that won the 2012 Intel ISEF Prize. Jack Andraka is the 16 year old kid from Baltimore who, at 13, decided that not having a reliable early-detection test for pancreatic cancer was a terrible thing. He resolved to create that test … and he did. It’s been patented in the US, and is in the process of being patented globally. Here’s the first-look video of his hilarious and inspiring call to action for open science:

Frankly, I count hearing that talk, and meeting Jack later that day at the MedX reception on the Dean’s Lawn, as the highest high point of my MedX experience. I told Jack that I couldn’t wait to see what he did next, but that even if he decided to rest on his uber-science-geek laurels with his mesothelin discovery, he’d given a gift to humanity unlike any other since Jonas Salk. Visit his website to keep track of this approachable, funny, huge-hearted young man who has the mind of a god.

The other big high of my MedX time was finally – FINALLY – being in the room with all three of the women who birthed #BCSM, one of the most powerful healthcare communities on Twitter. My ePatient journey may have been started by the voyage with my parents through their health issues, but it was forged into hardened steel by my own breast cancer experience. Connecting with Alicia Staley was one of the things that helped turn my book, Cancer for Christmas, into an Amazon bestseller in ’09. I spent much of the conference touching base with the #BCSM crew, who were in attendance in force at MedX. It was #BCSM Summer Camp!

The conference closed on Sunday with a keynote by Vinod Khosla, “2025: 20% Doctor Included?” Khosla’s viewpoint – which I share – is that technology will provide more reliable and efficient diagnostic tools, removing the mis-diagnosis risk that leads to most medical errors. He also stated that transformation of the healthcare system will not happen from within. Khosla backed up his positions with evidence, and I was nodding so hard in agreement I risked whiplash. It was the perfect close for the epic firehose of forward-thinking that was MedX 2013. Here’s the first-look video of Khosla’s talk:

What will I remember most about my MedX experience? I’ve listed some of it above, but even as I write this post I realize how much more mental food was served up during those three days. There were the conversations that happened over coffee, during lunch, with a frosty beverage in the Sheraton bar. I met people I’d known online for years, but had not had the opportunity to hug and thank for the impact they’d had on my life until MedX put us in the same room.

The Honor Roll there (in totally random order):

The list of people who I had not known before MedX, and who literally blew me away with their heart and insight? Here’s another random list:

And the amazeballs of awesome that is Zöe Chu:

zoe chu photo

What did I learn at MedX? I learned that there’s hope. Hope for healthcare, hope for humanity, and hope for every single person who winds up a patient (and hey, we’re all patients, right?). The key is that medicine is a team sport. It requires the full participation of everyone in every health-related transaction.

So pick up your ball, and let’s play together, shall we?

More medical Monopoly: How Steve Brill got it wrong

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image credit: Alec
image credit: Alec

I talked about Steve Brill’s epic TIMEpiece Bitter Pill: Why Medical Bills Are Killing Us last week. I’m still absorbing the cost data he uncovered in that piece, and the graphics and images alone are worth the $5.99 cover price to get a physical copy of the magazine. The stories he shares about the healthcare industry’s Great & Powerful Oz – the hospital chargemaster price list – do reveal a big reason for the out-of-control price spikes in US healthcare.

As brilliant, informative, and galvanizing as Brill’s piece is, I believe he dropped the ball just short of the goal line when, in his wrap-up recommendations, he talks up solutions that nibble around the edges of the cost problem, but don’t address its core cause: our crazy 3rd-party payer system.

Take a walk with me through the hallways of US healthcare history. Here’s the timeline:

  • 1880s: Chloroform in use as surgical anesthesia (thank GAWD).
  • 1900s: The American Medical Association (AMA) becomes a big player.
  • 1900s: Doctors no longer work fee-free in US hospitals (see bullet #2).
  • 1910s: America lagging behind European nations on health insurance (already?).
  • 1920s: Political complacency (must have been all the bathtub gin) leads to a “what, me worry?” attitude toward rising medical costs.
  • 1930s: Oops, we broke the stock market. Blue Cross, against insurance industry advice, starts offering hospital insurance coverage.
  • 1940s: Stiff wage controls in WWII defense plants lead to employers offering health insurance to their factory workers. President Truman draws up national health insurance plan, gets beat up on the White House lawn by Congress.
  • 1950s: Pharma industry becomes big player via antibiotic and vaccine development, along with meds for a variety of illnesses. Lots of proposals for national health plan, all get beaten up in public and sent home. Employer-based group insurance plans, offering coverage for “major medical” (hospitalization), become the norm.
  • 1960s: First incidence of the idea of a “doctor shortage”. Hospital costs have doubled since the last decade. Specialist MDs now are 70% of working doctors. Medicare becomes law.
  • 1970s: First HMOs established (rending of garments and gnashing of teeth followed swiftly behind). Medicare expenditures are growing faster than predicted. President Nixon proposes national health plan, gets beaten up on the White House lawn by Congress, complains about it on Watergate tapes. Starts “War on Cancer” instead.
  • 1980s: In the Corporate Decade, corporations start to take over, consolidating hospitals and health systems. Medicare shifts to paying by diagnosis rather than by treatment, private insurers follow suit. Private insurers start complaining that “fee for service” is being exploited by healthcare providers, but say nothing about the corporatization of healthcare.
  • 1990s: Healthcare costs now increasing at double the rate of inflation. President Clinton attempts healthcare reform, gets beaten up on the White House lawn by Congress. 16% of US citizens now uninsured. The AMA starts up the RUC (Specialty Society Relative Value Scale Update Committee), a star-chamber group that sets pricing for medical procedures in secret and hands it to Medicare. Price-fixing? Nope, cause Medicare publishes the list, not the AMA.
  • 2000s: Medicare starts to be judged as unsustainable. The RUC is still working in secret. Healthcare costs rise 100% for the average family during the decade. Employer-based group health insurance faces economic challenges due to changing workforce demographics. Insurance premiums for health coverage double. Oops, we broke the stock market AGAIN.
  • 2010s: Obamacare passes. President Obama’s repeatedly beaten on the White House lawn by Congress, but he gets a few licks in himself. Obamacare is a fat, wet kiss on the lips for the insurance lobby; how it affects the rest of us is a still-open question. Word starts spreading about the RUC.

In Bitter Pill, Brill’s “big bad devil” is hospital profiteering via the chargemaster. He highlights the hospital lobby as the most politically powerful group in any Congressional district, and calls out the high salaries of hospital administrators as a big driver of overall healthcare costs. He also recommends that pharma patents should be limited in their blockbuster-drug Monopoly game, and that medical malpractice caps need to be put in place – both of which I agree with 100%. However, Brill reserves most of his bitch-slaps for hospitals, and the chargemaster.

I counter that the chargemaster arose as part of an overall structure problem in US healthcare: like the rest of US business, it’s bottom-line and shareholder-interest driven. Customers (commonly called patients) aren’t given a thought in the corridors of healthcare power other than as revenue units. And that’s because we aren’t directly paying the bills. It really is all about the Bens, and who hands them over, in a commercial transaction – healthcare, and everywhere else.

I’m not saying that doctors, and hospital administrators, need to work for minimum wage. Hell, I don’t think anyone should have to work for minimum wage – who could live on $7.75 an hour, which amounts to the princely gross sum of $310/week? What I do recommend is starting to put value into the equation for patients, not just for shareholders and employee bonus assessments. Healthcare customers – patients – need to be able to assess the value of the healthcare services they receive, beyond the fact that it might be saving their lives. Yes, that’s certainly a high-value item, but it’s not part of every healthcare encounter.

Making that value apparent will require putting customers – patients – at the table for all parts of the healthcare conversation. Starting with (and yes, I know I’m a broken record on this) asking, always and everywhere, “How much is that?” when making a healthcare decision. We also need to take a long, hard look at employer-based group insurance, and maybe put it out to pasture. I’m on record with my thoughts that we should all be buying our own insurance – when various groups shout about “job killers,” I wonder if they’ve ever had to buy group insurance for their employees. That’s a real job killer, right there.

Access to cost information, hand in hand with outcomes information (available on Leapfrog’s hospital safety app and other outcome-metrics reporting tools), will reveal the value of a service. That’s what will really reform the system: patients asking questions, and working to get the full answers to them. And killing off the RUC would be a great idea, too.

Otherwise, we might as well go beat ourselves up on the White House lawn – hey, the Secret Service might help us out if we do …

Healthcare a passion of yours? Win an award!

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WEGO Awards logoWEGO Health is an online network of people from across the globe who use the internet and social media to connect around health and share health information.

WEGO calls us Health Activists, and they’ve  created a special awards program to recognize those Health Activists who are making a real difference in the online health community: click here to find out all about it. Health Activists are doctors, patients, caregivers, family members, any and all folks who care about their own health and the health of their families and communities.

I’ve signed up to be an Awards Ambassador – that means that I’m doing what I can to share the WEGO Health Activist Awards with my audience to make sure that all Health Activists are recognized for the efforts they make every day. Take a spin over to the nominations page and recognize your favorite health leaders. There is no limit to how many people you can nominate so make sure to recognize everyone that you follow, fan, or friend. WEGO Health has 12 different categories so everyone should fit somewhere!

Is there someone who inspires you to get and stay healthy? Is there someone whose online presence helps you  manage a chronic condition? Is there a healthcare professional in your life who has guided you, your family, or your community toward better health with their work on the web? Nominate ’em!

There is no limit to how many people you can nominate so make sure to recognize everyone that you follow, fan, or friend.  WEGO Health has 12 different categories, so there’s a slot fo any kind of online Health Activist!

So go on – NOMINATE!