#MEQAPI TweetChat

On an average year, the estimates are that between 90,000 and 400,000 patients in America die untimely deaths due to medical error and missed opportunities. (The earlier IHI studies estimated 90,000, and more recent research hints at 400,000). The toll of injury related to medical error runs into the millions, and the financial cost of waste, medically unnecessary care, and dealing with sequelae of mistakes runs into the billions of dollars.

While we may object to various technical aspects of the research papers, find fault with elements of the methodology, or just plan balk at the thought of physicians killing patients, clearly healthcare is in need of quality improvement.

The MEQAPI tweetchat aims to give voice to a broad range of stakeholders in healthcare quality, and will include everyone from administrators to zoologists, and include physicians, nurses, researchers, bed czars, cleaners, and yes, patients and care-givers.

The format will follow a similar structure to the famous and well-loved examples of #HITSM, #HCLDR, and #IrishMed – guest moderators will pose 4-6 topics in sequence, aimed at igniting discussion and interaction.

If you would like to moderate a #MEQAPI tweetchat or suggest some topics, please contact us at @MEQAPI, or email mloxton@meqapi.org.

Oh, and the first #MEQAPI chat will take place on Thursday 12th Jan at 15:00-16:00 ET

See you there!

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The Three Horsemen of the Coming Healthcare Apocalypse

Ok, so not really – It’s not about horsemen, it’s already partially here, and it won’t be an apocalypse either. It is however going to be a very big problem, it’s going to bankrupt some people, destroy some industries, and it’s going to put a massive hurt on almost everybody for many decades to come.

There are three healthcare issues that interact with each other, and which would have been a huge problem individually, but are going to slap us hard across the face when put together. I am talking about the Aging Population, Obesity, and Climate Change.

Aging Population

Here’s the thing. 10,000 Boomers are retiring per day, they did a horrible job of preparing the next generation to take the helm, and there are fewer of the next generation to do so anyway. We already have a looming shortage of nurses and doctors and medical technicians, and when a bolus of them retire and need medical help, we simply won’t have enough replacements to take care of the aging population. If your organization didn’t have a knowledge management, and training and recruitment plan already in motion ten years ago, the bottom line is that it’s too late. The chances are that you won’t save your organization from collapsing, and the best you can do is arrange a slightly more elegant landing than a straight-up belly flop from the highest diving board.

The medical schools have been focused on keeping profits high, the APA on keeping competition down, and who in heck knows what legislators were doing. Probably nothing. Maybe just pulling practical jokes on each other. So we have let the Magic Sparkle Fairy of the Invisible Market and siloed interests and perverse incentives drive how we scaled, staffed, and recruited for medical schools, and we are going to be massively, monstrously, marvelously short. We are already short, and it gets worse.

We are going to have the same problem across every part of healthcare, and our normal go-to plan of stealing skills from other countries isn’t going to work because they have the same problems.

That was the good news.

The bad news is it’s going to be much, much, much worse than I said. We didn’t invest in the infrastructure or save for this either, so this is going to be a huge, nasty drag on getting anything done in healthcare.

Obesity

The entire world is getting heavier, and the US is one of those leading the charge. I mean of course the people are getting heavier. All ages, all genders, all races. All income groups. Some a bit more than others, but all of them are slowly getting heavier. Actually, not so slowly. Kinda fast. In fact, very fast – the rate has doubled globally since 1980. Obesity is now something that 35% of Americans can call their own, and the number is climbing.

With obesity comes a rapid increase in a whole raft of medical conditions, including diabetes, coronary disease, cancer, depression, and so on. All of them very expensive, chronic, and thoroughly entangled in social determinants of health and perverse incentives. One example is that we subsidize corn production. That creates cheap corn syrup. Corn syrup is added to every food and drink imaginable. It contributes to obesity, diabetes, stroke, and tooth decay. Wonderful stuff. So we fund a thing that kills us. Wonderful. We do that a lot.

We have entire industries whose focus is to craft very unhealthy food that is very appealing to our instincts, the way our brains work, and are kinda habit forming. The more money they make, the sicker we get, and they like making more money.

Climate Change

Despite Congress being really conflicted over whether it is happening, whether we are causing it, whether it is more important to bring out tortuous laws about gender assignment and public restrooms, Climate Change is increasingly a topic in healthcare. The anticipated effects of Climate Change of healthcare can be seen in research papers, conference sessions, and lectures at medical schools. The news isn’t very good. Well, actually not “good” as much as really bad.

There is almost no healthcare problem that is not made worse by Climate Change. On its own, Climate Change would be a darned pest. It will disrupt the agricultural supply chains, submerge some of our business transport links and cities, and increase damage to infrastructure through storm surges, hurricanes, tornados, and other forms of interesting peak weather. However, that’s just the entertaining stuff. It will also lead to resurgence of old medical enemies, shift vectors into novel regions, and hike up emergency visits for everything from asthma to zoonotic infections.

Conclusion

So even together these three aren’t an apocalypse, and won’t end the planet, our species, or even halt the amount of sports we watch. From the couch. With a Big Mac and Fries. And a soda. A big one. The super-slurp one that’s five times the size of our bladders and has enough corn syrup to kill off a platoon of insulin-producing beta cells. Not an apocalypse.

While it won’t be an apocalypse, each one will be a bit like getting a backhander through the face. On a cold morning. With a fish. A large wet fish. The three together will be like getting three individual fishy-slaps through the face, followed by another, bigger fish. With spines and slime. And frozen. A hearty backhander though the face on a cold morning with a large frozen fish, wielded by an Olympic medalist in fish throwing.

A bit like that.

Are you ready?

BPM & CM – My takeaway from the Global Summit

Thanks to Dr. Charles Webster (@wareflo), I attended the 2015 BPM & CM global summit in Pentagon City last month.
During the three-day summit, Dr. Webster interviewed me and several other attendees, and broadcast live over Periscope.
His intention was to find out what we each hoped to get out of the sessions, and then to follow up afterwards to find out what we saw as the major takeaways.

It has taken me nearly a month to settle on what I took away from the seminar, but here is my answer to his question:

  1. There was an elephant in the room
  2. The field has achieved a great deal of progress, but still has a long way to go
  3. There is a huge opportunity to improve healthcare

Before I talk about those, here are my top three favorite sessions

  1. Chuck Webster’s session on wearable workflow featuring @MrRimp. (It’s not every day you get that level of geekiness crammed into a presentation)
  2. Anne Rozinat’s session on process mining using Disco
  3. Aaron Drew, U.S. Department of Veterans Affairs & Business Architecture Leadership Panel, who spoke about the future of the VA’s VistA EHR design

Chuck thrilled us all with MrRimp, and hinted at a future in which wearable technology would form part of seamless workflow. From door to doc and beyond, wearables are going to play a major role in healthcare, and will shift the patient to the center of a care team, rather than simply being the topic of clinician discussions. Wearable workflow also has the promise of having adaptive business processes in which the currently error-prone activities of basic data capture are shifted from clinicians to machines. Shifting this burden will free up hours per day per clinician, while increasing data reliability.

Anne eloquently stepped us through the concepts and technology behind process mining, and gave examples that were clear and compelling. Process mining is a big deal in healthcare, as I discuss in a whitepaper on process discovery in quality improvement. The big deal is that current methods to discover the as-is workflow are resource intensive and slow. Variation in healthcare settings is high, and processes may vary not just from hospital to hospital, but ward to ward, and even shift to shift.

If you have a healthcare system with dozens or hundreds of care facilities, scaling this is close to impossible, and even in a single facility with a small number of wards, can be daunting and expensive. Process mining does not entirely overlap with observational methods of process discovery, but it comes close enough to bring real-time process discovery within the reach of small and large healthcare systems alike.

Aaron described a future in which BPM is built into the EHR, and where patient centered care teams could interoperate seamlessly without the EHR creating obstacles and pitfalls. The original VHA EHR was built to solve the problem of running a single medical facility and managing diverse treating specialties within a single environment. Since then it has been pressed into service as a means to do care and bed management across the nation as well as handle medication ordering, medical imaging, and disaster planning.

This venerable but dated EHR has architectural limitations that are no longer up to the challenges and demands of the modern care environment. The VistA Evolution project details a ground-up rebuild of the architecture and technology, and will put VHA back in the lead with a groundbreaking EHR.

That’s my top-three picks for sessions.

Now for the elephant

During one of the sessions, the presenter was explaining how he wished that US management and C-Suite were as tuned into the need for efficient and effective BPM as the executives he encountered in Germany. What followed was, from my perspective, a remarkable response from the audience. As a qualitative researcher and quality improvement practitioner in healthcare, whenever an audience is animated it’s important to pay attention.

Nowhere on the agenda was a discussion related to management itself, none of the sessions involved management best practices, and no speaker directly addressed the topic of executive sponsorship and behavior. Governing policies regarding process improvement and quality weren’t a listed topic. However, what came thick and fast, in raised voices, were accounts and agreements that US business practices were a major impediment to improving processes.

One person gave an account of how short-term focus and lack of forward vision was crippling attempts to improve workflow in the business operation. Another described how quarterly metrics resulted in punitive reactions to improvements, and that improving a process for long-term success were often cancelled by management because of a short-term focus. Somebody else gave a personal account of management cancelling projects that were designed to improve quality and efficiency. The projects couldn’t deliver within a financial quarter, and so they were terminated.

Whether the specific projects were viable or not, is something we can never know. What was clear is that the tone and degree of participation in this session, and on this specific topic, were remarkable. The topic evoked a far higher degree of audience participation, and the degree of vociferous agreement stood out. The thing that nobody was talking about, but was evidently on everyone’s mind, was that US business models are a significant cause of bad business processes.

That bears some thinking, especially in the US healthcare market, where the cost of bad processes is paid in blood and death.

BPM & CM advancement

With the release of BPMN v2.0, and the advent of DMN v1.0, the field now has an accepted set of standards that can be used to model business processes. This is great news for fields that include quality improvement, business reengineering, and business design. This means that a wide variety of workflow and process design tools will produce interoperable if not entirely interchangeable process models. It also opens the door to being able to build processes that can be directly embodied in business logic in the workplace.

What is less stellar is that while over 80% of all process models are created and reside in Microsoft Visio, the model you created in Visio only pretends to be a BPMN model. It’s like a picture of a dollar bill – it looks like one, and it can be named “dollar bill”, but you can’t buy anything with it. You can’t just flow your business data through the Visio diagram to see if something is wrong.

Perhaps with time that will change, but it isn’t a pretty picture right now.

Opportunities in Healthcare

Putting this together, if there is one industry where wearable workflow, process mining, and BPM standards could benefit operations, it is healthcare.

  1. Healthcare costs in the US, account for up to 60% of bankruptcies
  2. Preventable medical mistakes are the third highest source of untimely death
  3. Incompatible processes are the daily reality for patients and providers alike

 

Improving the performance and conformance of business processes, placing patients at the center of their care team, engineering humans out of data entry, and standardizing processes across points of care could save lives and money. It could shift US healthcare from being the most expensive in the world to being at least on par with the OECD averages. It could move US healthcare outcomes from the doldrums to being in the top five percentile.

That’s my story, and I’m sticking to it!

Utilization Management and Climbing Healthcare Costs

With all the attention that the soaring cost of healthcare has been getting over the last few election cycles, it’s easy to assume that this is a new phenomenon, and that back in the “old days”, it wasn’t a concern.

Quoting my own previous papers on the topic: The actual  history of healthcare and cost is different, however, and the rising cost of healthcare has been an issue in the US since the early 1920’s, and led to the formation in 1927 of the Committee on the Costs of Medical Care.
Although health insurance firms had been concerned over high medical costs which they identified as being at least partly the result of unnecessary procedures and hospital stays, it was the creation of the Social Security Act of 1965 for Medicare and Medicaid Title XVII and XIX that provided the impetus for a focus on methods to standardize admission and hospital stay decisions.

During this time, there was significant variation between physicians, hospitals, and regions on the use of procedures or inpatient admissions, and it was typical for patients to be admitted for weeks or even months for observation or for procedures that would currently require less than a week or even be performed on an outpatient basis.

The Social Security provisions required clinical evaluation and review, but did not set criteria. In the early 1970’s a Congressional subcommittee estimated that were over two-million unnecessary surgeries per year across the US. As a result, there was a growing requirement for standards regarding procedures and inpatient admissions. [1]

To give a context of scale, physicians who fail to follow evidence-based clinical criteria add a $500 billion cost burden to U.S. healthcare by providing overly aggressive or ineffective care. [2] In a study of contribution to cost by cases that do not meet clinical guidelines, Cutler et al found that patient demand was not a significant contributor, but that physician preferences unsupported by clinical evidence accounted for 36%  of end-of-life spending, and 17% of total health care spending. [3]

One approach to reducing costs and controlling the “exuberance” of a free market that would naturally tend towards increasing use of medical products and services, is to have clinical episode of care criteria. Utilization Management criteria can be used prior to encounters  (prospective review), as part of the triage and episode of care decisions (concurrent review), or as a quality improvement tool to assess episode of care after the case (retrospective review).

With this backdrop of cost burden, it is clear that UM plays a critical role in provision of appropriate care. UM adds value by reducing the incidence of unnecessary care, and by placing the patient at the most appropriate level of care with the least possible delay. Effective UM supports efficient scheduling of inpatient admissions and procedures by reducing the number of unnecessary admissions, and providing an evidence-based mechanism for admission decisions. Modern UM balances Cost vs. Care through a systematic process and evidence-based criteria.

References
1. Field, M. J. (1989). Controlling costs and changing patient care?: the role of utilization management. National Academies.
2. Goldberg, C. ‘Cowboy’ Doctors Could Be A Half-A-Trillion-Dollar American Problem, 2014.
3. Cutler, D. Skinner, J. Stern, D. and Wennberg, D. “Physician beliefs and patient preferences: a new look at regional variation in health care spending,” National Bureau of Economic Research, 2013.

Electronic Health Records: Where they should be Going but aren’t

The past few years, mostly because of the Affordable Care Act, the adoption of Electronic Health Record (EHR) systems in the USA has seen a dramatic growth. Because of the rapid climb, EHR vendors have been trousering some pretty large amounts of revenue, billions of dollars, in fact. This is not a bad thing per se’, but as Congress suddenly realized this year, all that cash didn’t translate into giant leaps in innovation, as they predicted. Some of this is the result of a captive market, some because of psychosocial artifacts of clinicians, and some to do with that markets aren’t necessarily innovative.

One of the ways in which one can see the lack of innovation, or even basic maturity, is the degree to which clinicians have to type the same data over and over in different electronic forms. Not only do the EHR systems not interoperate very well between vendors, some don’t even interoperate with themselves! So it is a common sight to see a nurse type in records from a sheet of paper, then if they are lucky, copy and paste them into another form. If they are unlucky, they get to retype the same data multiple times in different EHR screens. If they are doubly unlucky, the system is also somewhat fragile, which isn’t unusual, and it aborts the session before the data is saved. In that case, they get to retype it all again when the system comes back to life. Sometimes this happens several times a day – in one case that I encountered, the clinician had to try fourteen times before the system recorded the data!

This is obviously a pretty abominable situation, and to get even the most basic degree of workflow into this is going to take a lot of effort and money. Luckily, the EHR vendors are flush and positively glowing pink with all that Meaningful Use cash in their fists.

The Goal

What I want to see isn’t beyond current technology or in the realm of science fiction, and not even where we ultimately want to be, but it shows where the thinking needs to head (In my opinion, that is).

What I want to see is the removal of the human from any data capture that doesn’t actually require their expertise.
Not really a big ask, given that we can put intelligence in spectacles and the average smartphone has more brains than it knows what to do with.

So let’s say a patient arrives for a consultation.

When they enter the waiting room, I want them to get a transponder sticker. These are dirt cheap, pretty reliable, and can be scanned without actual contact. At the reception desk, the clerk reads the sticker and associates it with the patient record. Now I can tally who left without being registered (elopement), how long it took (primary wait time), and at which stage of the encounter all the patients are (census).

When the patient is called, they are read leaving the waiting room, and again when they enter the examination room. The nurse or nurse practitioner scans them, and the patient record is already onscreen in the room when the nurse scans their ID on the workstation. Each vital sign collected goes directly into the patient record because the instruments are vaguely intelligent. Blood pressure, pulse-oximetry, weight, height, respirations, temperature, etc. are all directed from the device to the EHR simply by using them on the patient. These are all time-stamped, have the ID of who was using them, the ID of the device, and are shown as machine entries in the patient record.

Verbal notes can already be captured through speech recognition, but let’s say that the nurse actually has to enter this themselves. They don’t have to search for the patient record or the screen, those are already there, and they simply need to verify that the patient record is correct. (Although unless the patient swapped armbands with somebody, we are pretty sure who they are).

When the process has reached a certain point, the EHR can buzz the physician that the patient is close to ready. So no long wait while the nurse has to write things down or type in much, and no need for them to go find the physician.

A similar scenario unfolds when the physician enters: the room, patient, and physician are associated in an entry event because all three have transponder identities. Relevant patient data is already displayed when the physician scans their ID at the workstation to login, and again, any use of instruments captures data. Listening to the patients lungs with an intelligent stethoscope can capture the sounds, timestamp them, and put them into the correct place in the patient’s record. Even more wonderful, if the patient has any electronic records pertinent to the encounter, these can be transmitted from a smartphone Personal Health Record (PHR) app.

The only parts the physician play in capturing data is when expertise is required or when the machines can’t (yet) do it themselves. There is no reason on earth why a scale, blood pressure cuff, or pulse-oximetry device can’t transfer the data to the EHR themselves. Only the most antiquarian of medical offices don’t already have devices that display the data digitally, it’s just that we then typically ask a human to write it down or type it into the EHR manually. That is a bad use of resources, and opens up opportunities to get it wrong.

With time stamped machine data, the practice can start monitoring movement and wait times, and would be enabled to make adjustments to their workflow to optimize patient flow, and reduce unnecessary steps or waits. Staffing rosters and equipment placement can be evidence based rather than rely on guesswork, and bottlenecks in the processes will be far more visible.

Conclusion

The basic theory is similar to industrial engineering – don’t ask a human to do something that the machine can do. Free up clinician time, reduce transcription errors, and allow the clinician to focus on where their expertise lies – not in being low-level data capture clerks.

We should be demanding that equipment manufacturers and EHR vendors get their act together, and stop making clinicians do their dirty work.

That’s my story, and I’m sticking to it!

Learning from the Past – Risk Management at National Scale Using PHR

Introduction

The 2014 World Development Report from the World Bank sketches how confronting risks, preparing for them, and adopting appropriate coping strategies can make a vast difference in outcomes, sometimes at an epic scale. In 2010, both Haiti and Chile were victims of large natural disasters of similar destructive capacity. Both countries experienced serious earthquakes, the larger of which struck Chile. However, while Chile suffered a loss of 300 lives as a result, Haiti lost in the order of 250,000 lives.

The World Bank attributes this to several causes, one of which is the degree to which Chile learned from a previous experience and invested in insurance, undertook preparation to reduce risk, and improved their capacity to cope with the aftereffects of future disasters. Chile confronted the lessons of the previous disaster, there was a national awareness, and as a result, building codes were changed, and the country took insurance both against damage and in terms of divestiture of investments and commerce. These changes allowed Chile to suffer less damage to people and infrastructure, recover faster from the shock economically, and to learn from what worked and what did not. Without these investments, it is believed that Chile’s death toll in the 2010 earthquake would have been of an even greater magnitude than that of Haiti.

The WDR2014 report is an evolution from early risk management approaches, and instead of the highly technical perspective taken in earlier years, the report views risk management as a long-term and strategic process. The WDR2014 report sketches two principles in risk management: To be realistic, and to build foundations. In the former, they are recommending that risk reduction attempts be pragmatic and simple rather than theoretical and extensive, and in the latter case, they are advising that risk reduction efforts build on each other and take a long-term view. To comply with this advice and to manage risk effectively requires that the efforts take into account several obstacles, such as the information requirements of the population involved, human behavior and change, resources available, and the uncertainty of risk.

Risk Management in the WDR2014 report thus rests on four “pillars”

  • Knowledge
  • Insurance
  • Protection
  • Coping

The focus of this article takes a cue from the two principles, and offers a narrow perspective on a single issue, that of the health records of people forced to migrate because of shocks such as natural disasters. This focus addresses the knowledge needs when receiving healthcare organizations must care for refugees and people affected by shocks such as natural disasters, but could hold true for any form of shock in which healthcare delivery was disrupted. The paper addresses a form of insurance in the shape of planning for eventualities, protection from medical delays and mistakes, and a coping strategy for dealing with migrant patients or disrupted healthcare delivery.

Case: Typhoon Haiyan 2013

In November of 2013, typhoon Haiyan reached the Philippines with the strongest winds ever recorded. As a result, the infrastructure was severely damaged, a large proportion of the population was displaced, and over six-thousand people died. The Philippines comprise over 7,000 islands, and few hospitals or health care providers (HCP) have Electronic Health Records (EHR). One highly specific problem was that people’s health records became unavailable both for those who fled and to those who stayed but were unable to reach their HCP.

For this article, a local doctor providing endocrine care was interviewed on Twitter using the hashtag #wdrrisk.

Throughout the typhoon, many Tacloban residents went to Manila either to escape danger or join family or friends who had left, and of these were people who were already ill with current or long-term chronic illnesses such as cancer, or became ill while away from their homes in Tacloban. Few people had made provision to take their medical records with them, and valuable medical information such as test results was lost or otherwise not available to HCPs in Manila.

The doctor interviewed for this paper is an endocrine specialist based in Manila, and saw many patients who were refugees from Tacloban. Patients typically had no documentation of their medical history, and no ability to access the facilities in Tacloban where their records were kept. Because few medical facilities in the region use electronic records available through the cloud, even those patients whose providers were on an EHR lacked the ability to access their records. Patients typically have only a vague recollection of what tests or procedures they have previously undergone, when these were carried out, and what the results were. As a result, patients without medical records experienced increased risks, delayed care, and additional burden of repeated tests. Where patients were on medication, a lack of a definitive history regarding dosages, patient reactions, and allergies required that HCPs started drug regimens from base dosages and take a conservative and cautious approach in order to avoid potential overdose or adverse reactions. As a result, many patients may have experienced sub-optimal results until the drug selection and dosages were calibrated to their individual needs and responses.

The doctor reported that repeating tests delayed treatment, increased patient risk, and raised the cost of care, but some tests cannot be repeated at all because the results are based on historical progression of a condition. The doctor was unable to fill in the blanks in some cases, and was left with an incomplete clinical picture that increased patient risk. For example, for some chronic patients the doctor needed histology test results that are helpful in cancer staging and which could not be reconstructed. Without these historical data, the doctor had uncertainty and had to make best estimates that may have increased patient risk or resulted in sub-optimal care. The lack of a longitudinal view of these patient’s history and healthcare journey, lost or missing data, and gaps in patient history increased the risk of inappropriate or ineffective care.

Personal Health Records

In order to provide effective healthcare, clinicians and other providers need information related to the patient’s present condition, past medical history, and core health records such as medication use, existing conditions and treatment, and medical images, prescriptions, and procedures. These are usually kept by the person’s primary care facility, and may be kept either as physical records such as patient files, x-ray plates, and the like, or as electronic records and images. However, when the patient migrates or their provider’s infrastructure is disrupted, these records may be unavailable. Personal Health Records (PHR) are an alternative that gives individuals the ability to either carry their health records on removable storage such as thumb drives, DVD, etc. or to link to them on the web using a secure repository, e.g. Microsoft HealthVault.

PHR puts the patient’s medical history in their own hands in a way that is likely to be transportable during a disaster, and unlike paper records, can be encrypted and secured in order to maintain patient privacy. The downside is that PHR relies on a certain level of technology and computer literacy on the part of the patient to realize the full benefits. However, simply providing the patient with their records in the form of an encrypted memory stick requires minimal computer literacy on the part of the patient, and is more likely to accompany the patient and be available during disasters than paper records.

The advantages of having PHR are:

  • Faster triaging leading to fewer delays in care
  • Definitive drug and test data, enabling better targeting of treatment
  • Longitudinal views of illness progression, allowing more appropriate treatment and drug dosing
  • Documented endorsement back to their home town HCP, allowing better continuity of care

Considerations

Tacloban had been hit previously by natural disasters, and although many aspects of the four pillars of Knowledge, Insurance, Protection, and Coping had been addressed with regard to physical infrastructure and administrative processes, the need for maintaining the fidelity of medical histories was not adequately addressed. Lack of learning from those events with regard to medical records resulted in preventable morbidity and mortality across the region, but there is hope for improvements due to new frameworks. The PHR framework for the Philippines described by Dr. Alvin Marcelo outlines a way in which lessons from Haiyan and other natural disasters in the Philippines could be put to use in creating a way to utilize PHR to avoid losing valuable medical data, and reduced cost, patient risk, and delays in provision of care during disasters.

Acknowledgment

This paper was developed as a result of interactions with the participants of the #HealthXPh tweetchat where the issue was first discussed. Further thanks go to #HCLDR, #BioEthx, and #HCSM tweet groups. A special thank you is due to Dr. Iris Thiele Isip Tan for her willingness to be interviewed online for this paper and for providing insight into the effects of not having access to patient history during disasters. Doc Iris also provided the links to the PHR framework created by Dr. Marcelo.

Better Care Planning Using Apps

In this post I will cover an aspect of the ePatient and the clinical setting of an appointment with a medical provider.

One of my previous providers restricted their patients to a single chief complaint, perhaps to keep sessions short and focus on the most critical issues. This always struck me as an essentially misguided approach – how was the patient to know what was the most serious complaint, and how would one ever have a meaningful relationship if only one thing was dealt with? I often wondered how satisfied the average patient was with this method, and how many left with serious and unaddressed issues. The freckle that bleeds on occasion might never get discussed, while the current sniffles or itchy eyes might easily take up that one slot. By the time the freckle was a big sore and the cancer had spread through the body, it would be long past the right time to have seen to early prevention.

From the patient side, the clinical setting is mostly a foreign and somewhat scary terrain, and maximizing the value of visiting a doctor faces serious challenges. These challenges include an asymmetrical power and risk balance between provider and patient, a knowledge asymmetry, and emotional hurdles.

In most people’s experience, a doctor is a somewhat intimidating figure, one that has all kinds of social trappings of power. In that sort of situation, patients (especially those from large power-distance cultures) may tend to have a hard time explaining their concerns, articulating clear symptoms and signs, or pushing back if the doctor gets it wrong or the treatment isn’t working well. In most cases, the patient is decidedly the inferior in terms of power and authority. The provider is also on the high end of the knowledge balance, and typically the only patients to rival a doctor in terms of knowledge of the condition, are those chronic patients who have earned their knowledge through time, pain, and intimate experience. In that situation, it is hard for the patient to have decent questions to ask, or have the gumption to ask them. Lastly, there is emotion. As the behavioral economists like Tversky & Kahneman, Ariely, and Gneezy, have demonstrated in many experiments, clear thinking and intellectual performance tend to be rapidly eroded and compromised when emotions ratchet up – and what is better at winding up our emotions than fear, pain, and the threat of illness or nasty (or embarrassing) tests?

The tide is certainly against being able to clearly articulate specific concerns, symptoms, and questions, and we haven’t even covered how actually being feverish or having a headache or being nauseous can mess up the ability to execute an effective clinical visit.

So clearly having some help in coming up with good questions and planning the visit would benefit most patients.

Even if you are under the weather, in pain, or about to launch your stomach contents into a bucket, having some time before the visit to think over what has been going on with you and writing the main points and questions down is likely to increase the likelihood of remembering them when asked.

So the first step is writing stuff down, and for this a pencil and paper are pretty adequate. The only downside is that you will have to remember to take it with you, use it, and then afterwards to file it somewhere with all the other medical records that you keep. Of course this raises a host of issues – what if you lose them, what if you misfile them, and even worse (probably), what if somebody else finds them – perhaps a somebody that would be very embarrassing for you?

The next challenge is, of course, capturing the answers. Most providers will not object to a patient fishing out their notebook and asking pertinent questions, or listing signs and symptoms related to their condition, and will gladly speak to them and let them take notes. Unfortunately, unless one is adept at shorthand and is remarkably cool-headed, most of what the provider says will be lost, and of that which one does catch, much will be forgotten within hours. A sad fact with regard to memory is that even under ideal conditions, recall fades fast. Up to 80% will be gone within days, and of the remaining 20%, some will be corrupted. Some things will be accentuated, some will be diminished, and some will be mixed with other memories.

This is where the app comes in.

While I may easily forget to bring along a notepad and pencil, I am seldom if ever without my smartphone!
With a secure app, notes can be stored safe from other eyes, and are already electronic so can be stored in a central repository.

As I described in the last blog on my ePatient experiment, I have selected Microsoft HealthVault as my Private Health Record (PHR), so I looked for a planning app that integrates with HealthVault. This reduced the number of apps that I could use, since a major criterion was to have integration, rather than best of breed and then sit with fantastic components but no functioning solution.

Of the several apps I looked at, I selected CareCoach for the experiment, and after a few small hurdles in getting it to integrate with HealthVault, I was ready to try. I found the process of linking to HealthVault a bit counterintuitive, and needed to contact the (very helpful) support team at CareCoach. What was not clear to me was that one needs to have both the app and use the CareCoach website. I personally think this is the wrong solution over the long haul, and they should expand the app functionality so that the website isn’t needed. Web portals and websites are so last decade anyway. It didn’t take much to get connected from there on, and the functionality was fairly easy sailing once it connected. The app seamlessly integrates with their website, so appointments made on the app or recordings made with the app show up on the website without any user involvement.

CareCoach doesn’t however integrate with a provider directory, so providers have to be manually captured in order to start the planning process. This is a weakness in my view, since provider registries are available, and like the research apps (WebMD, MedScape, Epocrates, etc.) it should be possible to search and select. In the longer term, the app needs to integrate with the research apps and the insurer apps in order to provide a seamless experience. Bottom line – don’t ask the human to capture stuff that is already encoded electronically.
Once the provider details were captured, the specialty could be selected. To set up the appointment there are a number of options, and if a condition is selected, the app generates a list of likely questions based on previous patient’s experiences. According to CareCoach, this amounts to some 70,000+ live doctor-patient interactions. One can tick off which questions are relevant or desired, and these are added to the planning list. One can also add additional free-text questions.

 
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My next scheduled visit was with my optician, and so I set about registering them in the app, selecting the type of visit, and thinking through what I wanted to ask them. Few of the suggested questions seemed relevant to my visit, so I manually set out a number of questions that I thought were pertinent. This puzzled me a bit, since some of the suggested questions wouldn’t make sense given the clinical specialty I had selected – why for instance would prostate questions be relevant to a visit to an ophthalmologist? Just to make sure that I hadn’t entered something wrong, I went back and added a dummy provider, selected ophthalmology as a specialty, and sure enough there were questions about prostates, urinary tract problems, etc. So perhaps something in the selection logic needs tweaking.

However, entering my own questions was easy and I had no other issues.

I could also record some notes if I liked:

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I didn’t do this effectively of course, because after I had started the session I realized that my notes were supposed to be for any symptoms or information relevant to giving the doctor a clear clinical picture. My medical notes are supposed to be discussed with the provider – So the milk note was pretty useless, but since the visit was a routine follow-up for field test it didn’t do any harm. My questions were things I knew I would forget to ask, and I would have forgotten but for them being listed in the appointment. Since I am over 45, it is important to start thinking about whether my sunnies are actually protecting me, and how long I can expect to go without needing attention for cataracts. (Living at high altitudes is a big risk factor for cataract).

The doctor was surprised by my request, but open to having me record her and was very curious about what I was doing and how this could improve my care. Since the practice does not (yet?) have an EHR, this was perhaps a good “worst case scenario” and shows that even if the practice isn’t equipped to integrate with an ePatient and doesn’t even have an EHR, they might still be able to participate in what the ePatient does, and to form part of a care team to a degree.
This is good news for the ePatient because it frees them from depending on the provider being high on the adoption curve, and gives the ePatient a way to build their own path if the provider simply isn’t technologically ready.
It only occurred to me afterwards that the retinal scan image (paper), my field test (paper), and the eye exam (hand-written notes) could have still have been captured. I could have simply photographed them and uploaded the images to my PHR. Low resolution is better than nothing at all, so perhaps I should add that in my notes next time so I don’t forget.

I flubbed the start of the recording and inadvertently blew right past the little screen that was designed to cue the recording, but I improvised and the doctor thought it was someplace between interesting and slightly amusing. Here is what I should have read to her:

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Unfortunately, the app doesn’t let one backtrack and restart the prompt, which may prove to be a problem if the provider asks for it to be read again, (or one blows right past it like I did).

Having the app lent a bit of a theatrical air which actually helped, and I found it easy to hit record, read off the questions, capture the answer, and move to the next question. After I left, forgot to pick up the milk, and arrived home, I was frankly expecting the recording to be a complete failure. After all this is a tiny microphone in a handset and designed for the mouth to be within millimeters, so how good was it going to be at picking up somebody across a table? However, holding it flat on my hand between us worked just fine, and I was amazed at how clear the recording actually was. The app then offered me the alternative of typing out my own notes from the recording, or uploading to a transcription service. Since CareCoach has an introductory freebie going, I sent it in for free transcription. This might give many people pause, and they might worry that sending recordings off to a third party to be transcribed is risky. However, although it does add risk, this is very much the same as what the providers have been doing for years. Many of them, especially in hospitals or large practices, will dictate their hand-written notes and a transcription service turns that into text and sends it back to them. So this isn’t anything new, it just wasn’t something patients typically did in the past.

So how did this work out?

As a test, I didn’t listen to the recording other than to verify that it worked, and I then jotted down a few notes on what I remembered the doctor saying – my sunnies were good, it would be a long time before I would need to think about cataracts, and something about glaucoma.

Now that I look at the transcript, I can laugh about just how right those psychology courses were about the rapid decay of memory.
What I recalled was less than 20% of what she actually said, and while I recognize most of it when I read it, there are some parts I don’t remember at all, and some that I remembered wrong. Her evaluation of my sunnies was also a fair bit more qualified than I had remembered – she didn’t just say “those are fine”, she also added that although they were wide enough and dark enough, they were not quite as tall as she would have recommended, and she also recommended that I wear a hat.

Something also changed in the relationship between us – I feel like I am now a bit more than just the customer or patient. It feels like we really are working as more of a team and that going through the recording process formed a slightly more equal relationship between us – one in which I play a contributing and guiding part, rather than just being a passive recipient of services.

Of course this will only work in some clinical situations – when you are strapped to a spine board and being medevac’d to the nearest ER, smartphones and apps are not really much use. However, for a great many scheduled visits this would work well, and small emergencies with relatively low acuity, recording instructions could be very useful. For this purpose the app has a nice big red button, so you can instantly record a session without having set up an appointment previously.

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Conclusion

I think that having the app was a great help in planning the appointment, and it helped me to think through what I wanted to achieve and what answers I needed. Having the app handy meant that I didn’t forget to ask, as is normally the case, and the recording process didn’t hinder the doctor, and gave me an accurate record of what advice I was given. It also changed the way the doctor answered me, and the answers were more targeted and clear. Having a permanent, secure, and accessible record is very useful, and being able to share this and future records with my other providers is probably going to be useful.