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

July 23, 2014


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


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.


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

May 5, 2014

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.


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:


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:


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.



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.


People at Work – Myth vs. Reality

March 31, 2014

People at Work – Myth vs. Reality, from Jeff Saltzman

Jeffrey Saltzman's Blog

Upcoming OrgVitality 


Please join the OrgVitality staff for the next webinar in our 2014 series.

People at Work – Myth vs. Reality

Tuesday, April 22nd, 2014  at 12:30 PM EDT, 9:30 AM PST

Presented by: Jeffrey Saltzman

Everyone has various traits which could be described as strengths or shortcomings. Some of them are known to us and some are hidden, despite, perhaps, being quite obvious to others. Some of these traits have their origins in how we have evolved as a species and how our psychology developed. Our tendency to see intelligent intent where there may be none is one such trait. And our ability to form up into groups to better accomplish tasks which we would have difficulty accomplishing alone is another. This ability to form up into groups, using our social instincts, led to the very first human organizations and later on to the complex organizations we…

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The Connected Patient: My Adventures as an ePatient

March 26, 2014


Firstly, let’s talk about what this is.

This is a blog – not an academic or research paper, not a product analysis, and not a study on healthcare.
It describes my experiences as I have pieced together one approach to connected health, and how I went about that.

With that disclaimer, here we go.

One of the big themes in healthcare over the last year has been the concept of “Connected Health” and the “ePatient“, and considerable hope is pinned on the idea that if patients are more active (and discerning) in the monitoring and maintenance of their own health, and use of healthcare services, population health will improve and healthcare costs will drop.
The premise being that autonomy and control will lead to better health outcomes at a lower cost. It all happens at the corner of individual responsibility and public health.

There is a lot of talk in the industry about a patient driven revolution, one that acknowledges that patients understand the impact of their disease and the associated treatments, that sees an urgent need for clinicians and patients to work in partnership , and accepts a need to challenge the status quo of practices and behaviors. (BMJ 2014;348:g1209). Tessa Richards, blogger at the BMJ, speaks to this with regard to patient data, and the role of the patient as an active participant, rather than just the subject of data within an EHR.

Part of this puzzle of improving healthcare is the concept of patient generated data (PGHD), and the idea that data on vitals, diet, and exercise, immunizations, sleep, and use of medications can be monitored by the individual to guide their own choices, and also be sent to their primary healthcare provider (HCP) – typically the person’s general practitioner. These data would fill in a more complete health picture, and the HCP could monitor and see patterns emerge that allowed lower-cost interventions to prevent or mitigate chronic disease. There could be fewer office visits, lower probability of emergency room (ER) visits, hospitalizations, or readmissions.

The three salient components of this view are:

  • Increased autonomy and control lead to improved health choices by the individual
  • More data over longer periods in the hands of HCPs lead to more focused and timely interventions, that will lower the use of high cost medical services
  • Monitoring of basic health and chronic conditions can enable better and cheaper care

So far, so good.

There are some behaviors that this is likely to give rise to, mostly for the better.
If providers know that their notes are going to be shared by their EHR with the patient’s PHR, they are going to take more care and be more complete than if they think only they will ever read them. This also drives patient compliance since the connected patient will be able to re-read the notes and instructions rather than walk out of the consultation room in a daze and then try to remember all the things the provider told them. The implications for patient safety are also important – being able to actually read the provider’s instructions are a vast improvement over trying to recall them from memory.
If patients think that skipping on walking for a few days or eating five burgers in a week is going to wind up alerting their doctor, they might be motivated to behave in a slightly better fashion.
It isn’t that this knowledge stops unhealthy behavior on both sides, they could simply not report, or think “what the heck”, but it certainly is likely to have an effect to the better, and for many problems, just a small change in behavior will be effective.
On the cost side, it means that instead of only showing up at the provider when there are symptoms, unhealthy behaviors and emerging signs and symptoms can trigger an alert to the provider to intervene. A single provider can handle a great many more patients by exception than in person. Monitoring a hundred patients in this way is far cheaper than seeing a hundred at the office, and far cheaper both in terms of time and the level of intervention.

In practical terms, a nurse practitioner could monitor for values coming across from the PHR to their EHR that exceed upper or lower control parameters of a large number of health metrics, ranging from exercise and sleep to compliance with meds, diet, or blood pressure and glucose measurements carried out by the patient. These alerts can trigger them to look closer at what is going on in the data over time for a specific patient, and either respond directly to the patient with suggestions or make a recommendation for an office appointment. They could also routinely examine individual patient records and reach out to the patients with encouragement or suggestions. Since the data include a large number of population health markers, new discoveries in medicine or changes in protocols could lead to a targeted outreach to patients with new information, suggestions, or closer monitoring.

Worth mentioning is that the connected patient is very important to the industry move towards patient care teams and initiatives like the patient centered medical home.

(My) Technology Approach

Of course there are technical and logistical considerations, such as whether people are able to generate health data without undue complexity and effort, whether they are able to get the relevant data into the hands of the HCP, and whether the HCP has the technology to do something with the data.

As an experiment, I put together components of PGHD to monitor some basic health data of my own. I selected a relatively low-cost approach, and one that at face value I would be likely to be able to sustain over a potentially indefinite period.

Firstly, I experimented with a range of fitness apps on the Android platform, and various Personal Health Record (PHR) applications both on the device and cloud based.
Some I rejected after only a short while due to stability issues or ineffective functionality, and I gradually arrived at some specific requirements based on hands-on experience.
I selected, and then signed up for, a Microsoft HealthVault account as my primary PHR, since this provided a fairly comprehensive set of health records in a free, cloud-based solution.
This choice naturally limited the usefulness of many of the Android apps, but since interoperability with a secure and extensive cloud-based repository is important, the remaining apps are more realistic than ones that are standalone and can only store health data on the device.

Health Records

Health records span an enormous field, from diet, through exercise, to medical records such as conditions, medications, and labs.
To give you an idea of the breadth of the health records that can be stored to HealthVault, here is a snapshot of the fields that can be shared from HealthVault and a carer or an HCP. This is but a small drop in the ocean of data that could be collected on a person’s health, and a truly quantified self would be an epic undertaking, far beyond what we can currently achieve with any sort of scalability.

Figure 1. HealthVault Sharable Data

My next step was to transition from the somewhat inaccurate (but free) step-counters and fitness apps that I could download onto my smartphone, and buy a FitBit Flex.
The Flex was chosen according to:

  1. Interoperability with HealthVault
  2. Price
  3. Features and reputation

The FitBit Flex tracks some things automatically, and more things manually.

Automatic Manual
Step count Weight goal
Distance walked Food consumed
Calories burned Water consumed
Very Active Minutes Sleep Activity*
Sleep Activity* Exercise
Calories remaining


Sleep activity is one of those that is partly automated and partly manual input, and here’s how it works.
Since the Flex can’t tell if you are awake or not, you have to put it into “sleep” mode manually, and then take it out of sleep mode again when you wake up. This of course leads to some days of missed data because you either forgot to put it into sleep mode or to take it out again. The way in which it is done also presents a few challenges – it works by tapping on it three times in rapid succession, and this is mimicked by some day to day actions like knocking on a door, clapping, or some kitchen activities.

So if you applaud during a show, you have to verify that the Flex doesn’t think you are sleeping.

To get the data into HealthVault requires setting up the FitBit smartphone app and configuring HealthVault to receive data from FitBit.
This process was fairly smooth, but not without its share of oddities, like waiting 24-48 hours for the first upload. Initially I thought I must have misconfigured and wasted a lot of time troubleshooting a working configuration.

Obviously not all fields are interoperable between FitBit and HealthVault, and even within a single concept, not all the field dimensions are interoperable or visible to the user.
For example, sleep and exercise data are transferred but there isn’t a perfect match of fields.


FitBit Field FitBit Value HealthVault Field HealthVault Value
Time 20:58 Bed Time 8:58:00.000 PM
Time 06:01 Wake Time 6:01:00.000 AM
Sleep Time 8h 20min Sleep Minutes 500
? ? Settling minutes 7
Wake State fully awake
Restless 18 min x 13
Awake 11 min x 2


Some values captured by FitBit, such as the Restless and Awake periods are not being used by HealthVault, while two of the values that HealthVault evidently received don’t appear to match anything that the FitBit app displays. “Settling minutes” is either received or calculated by HealthVault, but doesn’t show up in the FitBit app, and the meaning of “Wake State” is unclear and doesn’t obviously map onto anything in the FitBit app.


FitBit Field FitBit Value HealthVault Field HealthVault Value
Distance 4.92 miles Distance 4.92 miles
Calories burned 2,544 Calories burned 2544 Calories
Steps 10,157 Number of steps 10157 Steps
Very Active Minutes 67


The exercise interoperability maps slightly better, but also has a field in the FitBit side that doesn’t map to anything on the HealthVault side.

All in all, the average user should be able to navigate and configure this without help, and can get some basic health data uploaded from a device like FitBit to HealthVault.

Medical Images

Medical images are a challenge, and typically if you want to provide images to your provider or upload to HealthVault just for your own record, you need a third application that can convert jpeg or png images to Digital Imaging and Communications in Medicine (DICOM) format. It isn’t as simple as taking a photo of the lump on your hand and uploading. Firstly you need to get the photo as a jpeg (easy with a smartphone), upload to an application such as MIPAV and then navigate around a fairly large number of fields to be filled in that are part of the DICOM metadata standard. Some DICOM apps are somewhat inscrutable and at this point they probably assume you are a radiologist or somebody in the field. Typical data you will need to enter include Date, Patient Name, Description, Study Instance UID, Referring Physician, Study Type, and Body Part. It was obvious that the apps were geared towards practitioners rather than patients doing their own imaging.

In my case it took quite a few attempts, and I had to get HealthVault Support (thanks guys) to help troubleshoot. It turned out that the MIPAV app was incorrectly packing a certain required field with spaces that was meant to be null, and HealthVault was applying the standard rigorously and rejected the image. As a workaround I first converted the image to jpeg-2000, and then into DICOM, and that allowed it to upload.

In terms of general usability and maturity, I would say that image uploads are not yet ready for the average user.


The next challenge is to transfer the data from HealthVault to your healthcare providers or to get your medical images and data from your provider.
For this I set up the HealthVault Message Center, and there are a number of options.

At the lowest level of interoperability, you can simply print out the health record from HealthVault and take it with you to the provider appointment, and then get paper records back from them after the appointment and re-enter the data into HealthVault or scan them and load them into HealthVault– not very satisfactory either in terms of efficacy or security. Losing a piece of paper is a very real possibility for some of us. Scanning them in is fairly simple if you have a scanner, and you can upload them either as a Continuity of Care Document (CCD) or a Continuity of Care Record (CCR), This is a bit of a cheat, since CCR and CCD are actually competing healthcare record standards, and have specific fields and meanings that would not be parsed into computable health data from just uploading a scanned document. However, it is better than leaving the paper lying around in a file folder, and if they are in HealthVault you at least have an opportunity to find them again and nobody else will chance upon them while looking in your filofax for the electric bill.

A second option is to set up a provider or custodian in the Message Center, provide their email address and optional password, and then select which of the data in Figure 1 you wish them to be able to see. This however requires a provider to navigate to the website and to go through the login process. It is more secure, under the patient’s control, but requires a fair amount of effort on the side of the provider, who will need to keep a record of the login details for each ePatient. This is not really a scalable model since from the provider’s side it would require them to keep a record of each patient’s chosen PHR, the login procedure, and login credentials. Not all patients will share the same things, and not all PHRs will have the same fields available or in the same format, so it would be a very complicated world for the provider once significant numbers of patients share in this manner. It is the flip side to the mistaken idea that patient portals are a solution, but in that case each patient would have to keep a record of multiple provider portals, logins, etc. Since the average person has ~4 providers, and patients with chronic illnesses have ~15, portals simply don’t scale well.

The most integrated option I had was to set up a Direct account in HealthVault that gives you a <yourname>@direct.healthvault.com address.
This address only sends between Direct addresses, and is encrypted – so no spam and pretty secure. No paper records lying around, no manual portal-surfing, and no proliferation of user codes and passwords to remember. The patient sees everything in their chosen PHR and the provider sees everything in their EHR.

HealthVault even provides you with a natty little printout or email that you can give to your provider that tells them what to do:

If you are using an electronic health record (EHR) system that is certified for Meaningful Use Stage 2, then your software may be able to generate a CCDA and send it to me using the Direct protocol. (As you may know, Direct is a security-enhanced health messaging protocol designed to help protect health information when it is sent from one computer system to another.) Your EHR software vendor should be able to provide instructions. If you can’t yet send information via Direct, can you give me electronic records another way, such as on a disc? HealthVault accepts structured information in CCDA, CCD, CCR, and BlueButton formats, as well as information in unstructured files such as images, PDFs, and text. You can find more information about HealthVault and how it supports Meaningful Use Stage 2 at http://www.healthvault.com/providers.

Microsoft provides ample educational and instructional materials for providers, such as this overview on sending health information to patients

This option allows health records to be sent securely and effectively from the provider’s EHR to your HealthVault account and vice versa, with no extra work on the providers side, and only one login to your HealthVault account to you as the patient.

So far so good.

Unfortunately for me, this is where the wheels come off because of my four healthcare providers, none are able to use Direct.

  1. General Practitioner in Colorado: Only has paper health records
  2. General Practitioner in DC: Has an EHR, but staff don’t know how to get it to work to provide electronic records. (They spent huge money for an EHR but still print records)
  3. Dentist: has an EHR, but doesn’t have the functionality to work with Direct. Instead sent me my dental images over unencrypted email (!)
  4. Optometrist: has images on a standalone machine that doesn’t connect to anything, and all other records on paper

So at the moment I have limited ability to do any real work as an ePatient or be part of a meaningful care team with my providers. The technology is ready enough, cheap enough, and usable enough to support at a minimal level, but my providers are just not there yet. The question that occurs to me on many of the #bioethx, #hcldr and #hcsm tweet chats, is that at some point I might start looking for providers that are further along the curve, and are willing and able to connect. From a provider perspective, this might be a competitive advantage issue, and providers that aren’t able to offer ePatients a workable data exchange schema may find that their patient population is dwindling and they are left with high-cost low profit patients.


So what did I learn?

Firstly, you can get basic health info including allergies, insurance details, vitals, and essential fitness data into a handy, secure, and easy to use PHR.
Secondly, if you are conscientious, you can keep track of things like blood pressure, diet, water consumption, alcohol and smoking, etc. in the PHR, but you will have to stick with it and remember to keep inputting the data.
Thirdly, if you have a participating provider, and they are also ahead of the curve, you can start transferring some pretty useful health data to them, and get responses back with useful guidance. This should enable you to have better health, get expert advice, and do so cheaper and more efficiently.

The future looks better though – and probably just in time for Meaningful Use 3: weight, blood pressure, sleep, etc. will be things that can automatically be sent to a provider.
The ability to collect and share health data with a virtual team of providers is a game changer, and is allied to the ability to set personal targets, monitor dietary intake and exercise, collect vitals over time, through the combination of wearable tech and Meaningful Use.
It occurs to me when I wait for my turn in a provider’s waiting room, that the bulk of visits to the provider could be done remotely with these tools, and my provider team need not be in the same practice, town, or even the same country. There is nothing at this point that should stop the ePatient from building a care team themselves that might span the globe, and achieve better healthcare, cheaper. A big artifact of the connected patient may be the mass customization and commoditization of healthcare that many other industries have experienced over the last 30 years.

Perhaps it is time.

Justine Sacco and IAC: How Not to do Social Media

December 23, 2013

I usually blog on knowledge management and business, and for the last year mostly on the intersection with healthcare. This post is about how companies keep getting social media wrong and how huge opportunities are missed out of fear and cowardice. I was drawn into the Justine Sacco scoldgasm by a tweet by Dr. Ben Goldacre, world renowned for his fight against bad pharma and the need for transparency in clinical trials. I got to thinking about the Justine Sacco situation after seeing her employer’s response and a tweet by another doctor. The imbroglio of Justine’s ill-considered tweet garnered world attention, and drew comments from people as far apart as Dr. Richard Horton, editor of the premiere medical journal, The Lancet, and newspapers in Johannesburg. Here are the pertinent facts from my perspective:

  1. Justine hit send on a really bad tweet – who knows why.
  2. She was incommunicado for the next 12 hours enroute to Cape Town
  3. Twitter exploded
  4. Her followers went from 400 to 8,000
  5. The world’s attention was focused on her and her employer

What IAC and Justine did next was the second worst thing possible. With world attention on them, IAC semaphored their intentions – (a) to distance themselves from the situation, and (b) to punch Justine in the face as soon as they could. When Justine switched on her phone in Cape Town, and probably feeling isolated, embarrassed, and terrified, she went into fight/flight mode, and deleted her twitter and FaceBook accounts. IAC, true to their signaled intentions, duly punched her in the face by firing her, along with the lukewarm rejoinder that she really is a nice person at heart. #Fail With the world’s attention, they both killed the stage lights, shrieked, and scuttled off the stage. Justine had 2,000% more followers on twitter, her name was irrevocably linked to AIDS, and www.justinesacco.com was created to link to an AIDS charity. The twitterverse was focused on her next move. As many tweeps said, she dropped the mic. But that’s not all – while firing her effectively placed a distance between IAC and the scandal, IAC also sent a clear and stentorian message to its business partners and current and prospective employees. That message is “If you screw up, we won’t help you, we will stab you in the kidney”. Right now, over Christmas and New Year, you can bet that IAC employees are brushing up their resumes, updating their LinkedIn accounts, and browsing Monster.com. Likewise investors are looking at them as tainted goods. For Justine it is a disaster too, she got publically fired and humiliated just before Christmas, her life is a wreck, and her employability is rock bottom. It has fueled more fear about social media, and in some people’s minds has reinforced two nasty stereotypes – that women shouldn’t have jobs like that, and that social media is bad for companies. What a wonderful outcome – NOT So what if instead of fight/flight mode, they had gone into tend/befriend? What if they had planned for this kind of mistake. What if IAC had been supportive, and said that they would work with Justine to make amends and to apologize properly as soon as she landed. What if they had SMS’d Justine to tell her they would stand by her, and she should talk before doing anything. She could have kept the 8,000 followers, she could have embraced the charity, she could have become relevant. What if her next tweet (in keeping with her style on twitter) was something like: “OMG, totally screwed up, I am such an airhead sometimes! Tried to recycle Sarah Silverman joke, badly, hurt people, sorry sorry sorry!!!!” What if she asked for people to give her a moment to think it through, and asked for suggestions. There would have been the usual flaming and slut-shaming responses ranging from that she should be fired to she should kill herself, but there was a real opportunity for outreach, and there would have been real, thoughtful responses as well. One of them perhaps being that now that www.justinesacco.com already exists, she could take on a role in promoting AIDS awareness, and champion the cause. IAC instead took a cowardly and thoughtless path, and have lost an opportunity to show that they care and that they are supportive. That’s a shame, especially since they could have done good work against a horrifying disease that breeds on fear and ignorance, and is burning up millions of people across the world. That’s a shame.

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