From HX Refactored in Boston in June 2017, this – “Jeopardy Meets The Price Is Right, Healthcare Edition” HXR 2017: Casey Quinlan: Jeopardy + The Price Is Right: Health Care Mashup Edition from HxRefactored on Vimeo.
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Remember when American taxpayers spent over $25B(that’s billion) on digitizing medical records? If you don’t … well, we did. The last time you went to the doctor, how easy was it for you to see your aftercare instructions online, or follow up on your prescriptions, or get your lab results in the online patient portal? My guess is that it might have been easy-ish to see stuff in your doctor’s patient portal, but sharing that data from, say, your primary care MD with your ob/gyn or your rheumatologist — unless they were in the same system, in the same practice office — would have been a big NOPE. You would have done what all of us did back in the ’80s, and the ’90s, and the ’00s, and still today — you would have printed it out, or paid for a copy, and then lugged that paper with you to the other MD’s office. Where it would have been stuffed into a paper chart, and/or hand-entered into that practice’s EHR (Electronic Health Record). 20% — that’s one in five — MDs still use paper charts (as of 2016). OK, so now you’re as up to speed as you’ll need to be for the rest of my point here — American taxpayers have shelled out major moolah to digitize medical records. When it comes to those American taxpayers’ benefits from said digitization, that’s YMMV territory, that right there. Which makes the major moolah that the healthcare system is minting off of de-IDing and selling the data inside those records pretty infuriating. What, you say, you had no idea that was happening? Not surprising, because the healthcare system DOES. NOT. WANT. YOU. TO. KNOW., since if you did know, you might protest. Or even (gasp) ask to be cut in on that moolah. Have you ever heard of a company called QuintilesIMS [NYSE: Q]? If not, you’re not alone. IMS Health…
You can’t turn around these days without running into a headline about the Internet of Things (IoT). It seems as if everything from your car to your cardiac pacemaker is talking to everything else on the internet, and we’re all about to Die (because hackers) Live longer (because hackers) If you’re confused about the whole IoT thing, and what it means to healthcare, you’re not alone. As buzzphrases go, “Internet of Things” is having its Andy Warhol 15 minutes of fame on an auto-replay loop right now … but what will the actual interconnectedness of the technology we use in our daily lives deliver to us in the way of helping us live better/healthier lives? Will we find ourselves living out a cautionary “I, Robot” sci-fi tale as we become slaves to our IoT robot masters? The answer is … (wait for it) … “it depends.” And what it depends on is how we humans build and interact with our robot mast … um, the Internet of Things. The biggest challenge is that healthcare, as an industry, sees the people it serves – we’ll call those people “patients” – as the product, not the customer. Which, I think, goes a long way to explaining why this most human of all industry sectors – the one we seek help from when we get sick – has so resolutely resisted becoming digitally accessible/approachable to its customer base. If you need a ride, Uber. If you want to shop, Amazon. If you want dinner, Yelp or BlueApron. If you need a doctor’s appointment … well, you can call the office to make an appointment. Or use the portal (if there is one). Or hit up the local urgent care. But there will be plenty of waiting, and it’s unlikely to be a tech-assisted process…
The annual big-data party known as the HIMSS conference played out in Chicago – and online – last week. During the event, one of the central issues that arose in the social media conversation under the #HIMSS15 tag involved the one facing patients trying to access their health records, either digitally or on old-school paper: the security/access conundrum. Data that’s accessible to a patient could also wind up accessible to Romanian hackers (you’ve heard me on this topic before), and efforts at making patient data “secure” mean that data is often secure from the patient whose data it is. Patients give their forehead some serious keyboard every day over that one. The folks over at Software Advice released a report on HIPAA breaches on March 12*, which I only caught up with when I returned from my Mighty Mouth 2015 Tour of Info-Sec and Right Care. Full disclosure, I’m quoted in the report, but that’s not why I’m talking about it here. Here’s my biggest takeaway from the piece: 54% of the patients surveyed for the report would consider ditching a healthcare provider if that provider had a breach. Most Patients Would Switch Providers After Breach Key findings in the report: Forty-five percent of patients are “moderately” or “very concerned” about a security breach involving their personal health information. Nearly one-quarter of patients (21 percent) withhold personal health information from their doctors due to data security concerns. Only 8 percent of patients “always” read doctors’ privacy and security policies before signing them, and just 10 percent are “very confident” they understand them. A majority of patients (54 percent) are “moderately” or “very likely” to change doctors as a result of a patient data breach. Patients are most likely to change doctors if their medical staff caused a data security breach, and least likely to change doctors if hackers were…
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. Which 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…
The healthcare system is all about building patient engagement lately. Which makes me ask: if we get to engagement, will we ever get married? And if we do … will we wind up needing marriage counseling? Short answer: we already need marriage counseling, and we’re not even officially engaged yet. Herewith is the evidence that the doctor (and health system)-patient relationship needs marriage counseling, stolen adapted from a post on YourTango.com. You aren’t talking – Given the state of digital, or even analog, communication in healthcare, how can doctors and patients talk? Even when we’re in the same room, it’s conversation-us interruptus, given the whole 10 minutes we have for face to face interaction. And remember the last time you emailed your doctor with a question, and got an answer that day? Oh, right. That was the 14th of Never. Thank you, health IT infrastructure of doom, which is so dedicated to the security of our medical data that NO. ONE. CAN. SEE. IT. You see your partner as an antagonist – The healthcare system seems dedicated to keeping doctors and patients in an adversarial relationship. Doctors rat us out for our poor compliance in medication regimens without asking if we can afford said meds. Patients worry that their insurance premiums will go up if they tell the truth about stuff like smoking, or eating habits. Neither side seems capable of climbing off the “forces set in opposition” ledge. And the band plays on … getting less and less healthy in the process. You’re keeping secrets – See #2, and know that antagonists don’t share information well with each other. Doctors keep secrets from patients, i.e. how much treatment options will cost, with payers being fully indicted co-conspirators on that secret-stashing. Patients keep secrets, too, on stuff like cutting pills in half so that fiercely expensive medication will last twice as…
Now that I have, for my sins, been tagged as a patient engagement expert, I figure that entitles me to the occasional rant on the topic of the healthcare system – particularly the US iteration thereof – and its utter inability to understand how to connect and communicate effectively with its customer base: patients. If you’ve been a patient, for anything beyond a short trip to your primary care doc for something simple (and easily diagnosed) like a laceration or a minor infection, you know that arriving at the doors of The Medical-Industrial Complex is like being the new kid in school. There’s an old joke about bacon and eggs – the chicken is involved, but the pig is committed. In the ongoing sketch comedy/Shakespearean tragedy that is medical care. the clinical teams who deliver care, and the facilities in which they deliver it, are most certainly involved. Patients? We’re fully committed. We are engaged, we are fully present. What we’re not getting from the delivery side is an authentic invitation to engage. en•gage•ment: noun, a formal agreement, i.e. to get married; an arrangement to do something at a specific time; the act of being engaged, i.e. “continued engagement in trade agreements” Seems simple, right? Patient appears, asking for care. Clinical professionals deliver that care. Patient happy, clinicians happy, everybody wins. Oh, wait – did the doctor wash her hands before she started the physical exam? If the patient is aware of the importance of handwashing in preventing infection, and asks if the doctor lathered up and rinsed according to protocol, does that patient risk being labeled “difficult” or “aggressive”? If so, so much for patient engagement. Given that the statistics on handwashing in healthcare settings aren’t at 100% (~ 90% for RNs, < 75% for attending MDs in a 2008 study at an Ohio hospital), clinical folks…
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: 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…
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
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. 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,…
