Towards eHealth Liberation Day: the falling

This is the tale of one person's eHealth journey, from laundry basket to hospital to the PCEHR and beyond. A goat makes an appearance, as does a handsome ED doctor, but for EpiSoft's Jenny O'Neill, the day-to-day business of eHealth continues as the experience of 2010-2013 fades into memory.

Are you tired of those conference presentations where the speaker regales you with their own Close Encounter with the Healthcare System – the inefficiencies, the lack of co-ordination, the repetition of one’s health history details over and over? The speaker’s personal experience of their ‘patient journey’ is invariably used to highlight the need for further investment in eHealth.

And don’t you find it tedious when people draw long bows and make grossly generalised statements from their own personal experience? It’s not quite so annoying as people who know nothing about eHealth pointing out that if the banks can do it, why can’t the health sector? No, it’s definitely nowhere near as annoying as those ridiculous analogies – but it’s up there.

If you, like me, find personal eHealth journey stories really annoying and verging on the patronising to an increasingly sophisticated eHealth consumer group, stop reading – now. Or if you prefer, read on, because this is a personal eHealth journey with a twist.

It is no heroic battle with a serious chronic illness and medical misadventure due to inefficient paper-based processes. Far from it. This was a simple, easily resolved acute health issue involving the usual players (doctors and hospitals, patient and carers) and the usual mix of paper and electronic systems, but that has not stopped me drawing a number of long bows (see hypotheses below) from one’s personal experience, not in mobile health (mHealth), but in immobile health (imHealth). So let’s draw…

Hypothesis 1: Participation in PCEHR increases falls risk.

My personal eHealth journey story begins on a hot December evening in 2010 (it could have been dark and stormy to fit the plot but inconveniently, the sun had not yet set on a glorious day) when the PCEHR Wave 2 grant applications were due for submission just prior to Christmas. The rest of the nation was winding down around about this time, going out to lunch to celebrate a bumper year witnessing Armani-suited psychopaths from Wall Street at the economic rudder of the world steer the entire planet into an economic meteor storm.

Meanwhile, the local eHealth industry and its clients and pals were feverishly pulling together consortia and compiling over 90 compelling arguments as to why their particular eHealth project deserved some grant funding under Wave 2. Because healthcare is immune to economic recession, don’t you know?

The medical software industry was enthusiastic about Wave 2. We had blinked and missed Wave 1 and we trust some good somewhere came of that $insert-eyewatering-sum-of-money-here, but now here was a chance for all parties to compete on a level (level so far as we knew) playing field. A call for the so-called Wave 2 grants.

While a lot of healthcare providers submitted these grant applications under their names, their partners in the software industry did a lot of the ghost-writing. In my case, this was not ‘ghost’ in the sense of being invisible so much as ‘ghost’ in the sense of staying up until the wee small hours developing an unhealthy pallor and moaning about how little time there was to pull together a compelling story.

And now here’s the twist: after about four such nights spent thus and with the duties of ghost still incomplete, I made the mistake of pausing briefly in this marathon write-up and endless round of teleconferences and emails to undertake some long overdue domestic duties.

Piling the washing basket to way above eye height, I carried the basket out the back door (the step was about a three-inch rise), my foot slipped off the side of the doormat (a one-inch rise), the washing basket fell and dirty clothes spewed out across the verandah and covered the dog.

That was the entertaining part. The not so entertaining part was the sickening snap that followed the twist – the meaning of that old cliché made itself known the very next second. I heard my ankle bone snap and it made me feel sick, so sick I couldn’t get up, couldn’t even crawl back through the kitchen door.

Ligaments, bones, the whole complicated anatomy of a major joint was in screaming, burning protest at the treatment meted out by its sleep-deprived owner. A white veil descended over my vision and I stayed on the ground with elbow and head in the dirty washing till the kids came home. If I’d been just a few more steps down my personal eHealth journey – had I been coming back from the clothesline – it would have been clean washing and the situation would not have been quite so dire.

The neighbour had recently lent me his goat to get the lawn under control. Carl was brownish-grey with disconcerting boggling pale blue eyes and a tendency to be derelict in his duty. Carl ate the bushes and gnawed through the electrical cord of the fairy lights around the back verandah, but decided to completely ignore the lawn.

Carl was dead interested in the injured human and the dirty washing festooned over his back verandah. He came over for a closer look. You do not want a goat peering at you when you’re about to pass out. Trust me on this. They look cute dotted on a distant green hillside eating grass when they can’t get fairy lights but they are seriously creepy up close.

Carl was more effective than smelling salts – you don’t pass out when up close and personal with a goat for fear of being damned for all eternity.

Fortunately my kids weren’t too long getting home, getting me inside away from the imminent threat of evil and administering the RICE treatment. After a brief spell on the couch, during which we all vainly hoped that the rapid swelling was just a nasty sprain, I mentioned in a spectral drawl the two letters that fill all healthcare consumers with dread and make teenage boys positively quail – Eeee…Deee.

Being regular attendees at the local hospital ED after way too many seasons of school rugby, we at least all had the presence of mind to pack a good book.

Conclusion: Hypothesis 1 was supported by the evidence from my personal eHealth journey.

Hypothesis 2: Participation in PCEHR causes relationships to fail (before they even begin).

The next stage of my eHealth journey was a test of endurance, an ungainly slide down the front steps, an even less ladylike flop into the back seat of the car and a part-lurch, part-hop up to the front counter of the ED.

Registration and triage happened like clockwork and out came all the good books while we settled in for the most tiresome part of any eHealth consumer’s journey: the Wait for the ED Doctor.

He turned out to be tall and handsome and somewhere in the neighbourhood of my age and under ordinary accident and emergency circumstances, such attributes would have made the wait worthwhile, but these weren’t ordinary circumstances. Here I was, a middle-aged female in gear fit to meet a clothesline, ankles that had experienced too little recent personal attention for close scrutiny by an old pal much less a tall handsome ED doctor, and sporting a ghostly Wave 2 PCEHR complexion.

I hoped the doctor would think the pain was making me wince but when he got the x-rays back, he told me it was as he suspected: my ankle was smashed to smithereens and my pain threshold was off the scale, so he wasn’t fooled for one minute about what was really causing the pained expression.

Conclusion: Hypothesis 2 was supported by the evidence from my personal eHealth journey.

Hypothesis 3: The right information at the right time in the right place will save the consumer time, expense and inconvenience.

There was a computerised front desk, a computerised nurse triage process, a computerised expected waiting time with algorithm designed by the head of department, an uncomputerised encounter with the emergency physician (I really wished he’d had a computer to look at), a non-computerised referral to radiology, a computerised record of my visit in radiology, a paper letter of referral to an orthopaedic specialist and a visit next day to the orthopod’s office who had my image up on the hospital’s PACS web viewer, the operation planned and the surgery booked before I could bunny-lurch my way over to the seat in his office.

Where is telehealth when you need it? The x-ray was evidence enough of what needed to be done. The only benefit of a face to face was some serious practice on the crutches over a few hundred metres of broken pavement. I was impressed the surgeon had a picture of my ankle on the PACS web viewer. He was impressed too. The IT department had only just got it working on his Mac.

We talked about that for a while (platform and software compatibility, browsers and PACS, you know the usual stuff). I gave him some advice on who to contact for his next IT issue with the hospital (did some work in the IT department you see, so could drop a few names). I was fully diagnosed with a surgical plan before walking in the door and after a half hour getting from the car park on crutches, the appointment was over in about five minutes.

Notwithstanding the fee for outpatient attendance, which was clearly the only reason I had to put in a personal appearance, turning the consult into an eHealth advisory session clearly paid off. The orthopod gave me a staff discount in the mistaken belief (which I accidentally forgot to correct) that I was on the staff at the hospital. (Well, contractors who hang about for a long time can be quite as hard to get rid of as staff so it almost counts.)

Conclusion: Hypothesis 3 was not supported by the evidence from my personal eHealth journey but in the later stages of the study, some conflicting results were noted.

Hypothesis 4: Build it and they will come.

Next step was completing the six pages of hospital admission forms. Rather unfortunate timing as my own company’s eAdmissions system was not yet live at this hospital at this time so I had to fill in the six pages using the dying art of handwriting (in my case, being sinistra, an art never mastered in the first place).

Conclusion: Hypothesis 4 was tested using the negative hypothesis (don’t build it yet and they won’t come) and this was supported by the evidence. A longitudinal study on the subject over the next few years further supported the hypothesis that if you build something useful, there is a reasonable statistical likelihood it will get used.

(And just in case you missed the less than subliminal advertising, that’s the plug for one of my company’s eHealth products – mandatory inclusion for all articles written by a software vendor.)

Hypothesis 5: eHealth is essential ingredient in the safe and efficient delivery of healthcare.

The day of surgery went smoothly and no less than five people from the IT department came to visit beforehand. They must have heard on the grapevine and somebody must have been keeping an eye out for me on the computerised surgical list because they arrived five minutes after the nurse had admitted me. Somebody with a privacy hat on might be concerned about that but these five were motivated by concern for a colleague and a friend and I was humbled by the camaraderie.

That computerised algorithm for calculating time in operating theatre I had worked on a few years back with a statistician from Macquarie Uni was clearly paying dividends because this was production-line efficiency at its absolute best. In spite of staff in day-of-surgery admissions using a mixture of computer and paper, nursing staff in the pre-op holding area using a computer, staff in the theatre using paper, the anaesthetist popping around for a paper-based chat and the surgeon not to be found once I got to the OR (he was having coffee – we didn’t factor that into the algorithm), the waiting times were minimal.

The process from admission to ward was like a well-oiled machine, oiled (truth be told) not by the algorithm but by nurses and doctors with decades of experience.

Speaking of oil, the post-op evening was spent on the good oil in the form of some serious pain relief but the morning turned into serious boot camp for serious boot wearers. Mine was black with Velcro ties and grey padding, like a large ski boot. The nurse who gave me a quick demo on how to do up the boot and self-administer Clexane injections said, when I whimpered and expressed grave doubts about one’s ability to jab one’s own stomach with a needle, “Little old ladies who’ve had total hip replacements can manage this fine”.

She didn’t say “so why can’t you, you wimp!” out loud but I heard her loud and clear. I was glad the emergency doctor who had been a bit impressed by the injury-related pain threshold was not here to witness the timidity about needles.

The physio made the nurse seem like a professional agony aunt. She made me go up and down a set of stairs with crutches, insisting that I couldn’t be discharged till I had passed this ridiculous endurance test. I guess mastering crutches is like riding a bike – if you learn as a kid you never forget. The trouble was I was falling over and getting countless stitches throughout a clumsy childhood but by some weird twist of fate, never managed to break a bone, so had never learned crutches.

The one-metre-high staircase may as well have been Nanga Parbat. Insurmountable. The physio instructed, she cajoled and tried with moderate success to hide her frustration while I made several clumsy and red-faced attempts. My boys had arrived by this time and, anxious not to hang around a hospital ward any longer than was strictly necessary, they called encouragement and instruction from the sideline. They didn’t say ‘Get on with it, Mum’ out loud but I heard them loud and clear.

In the end, the physio stepped out for a moment, the boys stepped forward and with half-shove and half-lift, got me up the stair. The physio came back and there I was at the summit, triumphant in my cheating glory. The ordeal of that boot camp was over. I was ready for discharge.

And so home with two weeks’ supply of Clexane, the Wave 2 grant got written (couldn’t walk so may as well sit and finish that), my boys went off to New York and the real Florences of the world arrived to take control. First came my friend Sally to administer Clexane, which she dutifully did for a couple of days but I couldn’t very well ask her to come Christmas Eve when she was cooking for an extended family of 12 people.

It did seriously cross my mind to ask her, but no, that would be stretching the friendship a bit far. It was time to learn some self-sufficiency. Thinking all the while about the stoicism of little old ladies post their total hip replacements, I became quite a dab hand at self-injection.

And while on the subject of little old ladies, the next Florence on the scene was my mother. Mum is no stranger to medical misfortune, having survived three primary cancers, an asthmatic child who needed a lot of medical attention in the early years (known allergies were to house dust and school), and a husband who needed constant care in the last years of his life.

We went to my sister’s place for Christmas. Mum drove. Boundless sympathy notwithstanding, my mother does not fit the archetype of little old lady behind the wheel of a car, where she is a veritable lunatic. Picture being strewn across the back seat with a boot on the window sill, careering along narrow country roads with an octogenarian hoon with macular degeneration at the helm. One’s pain threshold may be high but there were plenty of other good reasons to develop a short term addiction to narcotics.

Conclusion: Hypothesis 5 was not supported by the evidence from my personal eHealth journey. There was overwhelming evidence that eHealth was only a small prop on the stage supporting a veritable ensemble of talented and dedicated care givers.

Hypothesis 6: PCEHR participation improves productivity.

To be continued …

Jenny O'Neill is the executive director of medical software company EpiSoft. During the tumultuous period between 2010 and 2013, she was vice-president and president of the Medical Software Industry Association (MSIA).

Posted in Australian eHealth

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