Data Interchange and Interoperability in Healthcare

I recently had to go for x-rays on my hip. The imaging company called saying they’d received the “order” from my chiropractor for a knee arthrogram without contrast.

Apparently, this was both wrong and confusing. It’s wrong, because the “order” said hip, but they couldn’t read it; also it’s confusing because, well something to do with x-ray and contrast.

After a short discussion, it turned out the imaging company received the order by fax. Yes, real actual paper fax. The US medical profession still seems to run on faxes. My prior cardiology hospital sent my medical records to my new cardiology Dr via, yes, paper fax. Hospital-1 printed the records to a fax based printer driver, which sent them uing a fax protocol to Hospital-2. Apparently Hospital-2 receives as images in a variation of the TIFF file format.

In the case of my PT, no such luck. Handwritten, manually faxed, received by paper. Even if there had been no problem this created a HIPPA privacy and security cost. In this instance, the cost to clear up the confusion likely cost almost as much as the actual hip x-ray, as that was all that was needed.

While I know there are data interchange standards in the USA for medical records, or as they are called PHRs, it seems there still nothing that is universally adopted. When I contacted my new cardiology hospital and offered my PHR in (Epic Systems) Lucy format, they declined and asked for them to be faxed.

There are a growing number of apps for both ios and android that support EHRs (electronic health records) however, for the most part these are tied to a specific hospital and/or medical group. A good example is the Epic Systems MyChart app. It can read the data from my former cardiology provider, including details of my ER/and cardio surgery and the prescriptions I was given. I can export the data using the Hospital groups website, and that’s it.

Unless you choose your medical providers not on their medical excellence, but their ability to import your lucy records, this is no use at all.

The Big Boys are doing data interchange

My interest was sparked by the recent announcement from Google, Microsoft, Twitter and Facebook introducing the open-source Data Transfer Project (DTP). For the more technically interested, you can read the DTP Overview here.

Ultimately it doesn’t look that different from the Enterprise Service Bus implementations we were working on 15-18 years ago. Same core concept, n-n interchange and interoperability. Same basic extensability through adapters and shared protocols.

I have to say, the use cases given for DTP are pretty weak. Conceptually, though there is much potential for this architected “Share…” facility. One of the key failings of DTP is that there is no ability to delete data, sure you can share your data to more sites/services but the DTP as specified doesn’t allow you to leave.

However, the most disappointing thing about this announcement is it’s aimed at allowing you to move your videos/photo’s, social media posts, and hopefully subscription platforms among the services supported.

To become a supported platform there are a few fairly simple architecture docs and then you have to build plugins or adapters to interface to the service to be able to send/receive data.

Ho hum. Boring. There is definitely space for big tech co’s to innovate around data interchange, but who cares about social media. I want to be able to pay for a PHR service, where I can store and control my medical record. Where I can grant access rights and authorise medical providers to retrieve my data, where I can see my medical records from across the providers etc.

I’m hoping that someone will point out this already exists, or that Nigel or Tom, who both now work in Helathcare will tell me why this isn’t a good idea. The USA is in desperate need for data interchange but it isn’t for social media.

FURTHER READING:

  1. Paper on moving from paper to electronic records and the associated problems.
  2. Review of numerous leading healthcare records mobile apps.

 

Maternity medical crisis

As we approach this year’s open enrollment period for health insurance, I continue to be shocked and disappointed about almost everything I learn about the US Healthcare system. Before I return to notes about my own experiences and my own health, maternity care is another healthcare topic that doesn’t often get discussed, as the average American prepares to pay more than $10,348, per person, per year on healthcare.

While many argue about the definition of single payer, and if it would lead to socialism (and what that is?), the inefficiency, mistakes, cost and just outright expense of what should be routine treatment, continues to make me despair.

America has healthcare snobs, millions of them, they just don’t realize that while they might have great access to medical facilities and Doctors, that doesn’t mean it’s always good, or that the system acts in their best interest. However, any suggested change is met with claims of death panels, socialism and more. Oft heard is also they ‘don’t want the Government in the healthcare.’

Even I was left speechless as I watched a recent CBS Sunday Morning segment on maternal healthcare. Among the points made were:

  • U.S. “most dangerous” place to give birth in developed world
  • The United States is ranked 46th when it comes to maternal mortality. That’s behind countries like Saudi Arabia and Kazakhstan.
  • “Sixty percent of the deaths in the United States are preventable,”
  • At least two women are dying every day

And it’s not about access to healthcare; it’s not about the poor without insurance; yes, there is a racial element, but it’s not what you’d think. Here is the entire segment, well worth watching before you enroll this year.

| Edit: The embedded video doesn’t apparently load in some browsers, so here is a direct link to the CBS This Morning web page. https://www.cbsnews.com/news/maternal-mortality-an-american-crisis/

Can it be true that women giving birth in America are more at risk than women in dozens of other countries?

“Profiteering” in prescription drugs

The New York Times has an interesting piece on the price of drugs, of which Pharmacy Benefit Managers are only part of the story. Add to this the general secrecracy over prices and Pharmacy benefits and drug list (aka the formulary) which are their negotiated discount drugs, brand or generic.

This has been my experience, even without insurance, it’s almost impossible to find out how much specific drugs are going to cost in advance; if there are cheaper generics; and if there is a better price.

Glass full, not half empty!
Drugs R-US

I took an alternative route and did a deal with the devil for my most expensive drug. Despite having supplied the drug manufacturer with more financial information than I did to get a mortgage, they still declined to help financially, unless and until I applied for AND was declined for Medicaid.

I most probably would be eligible for (full scope) Medicaid, since I’ve already surpassed the 5-years/40-quarters requirement. That said, I’m really not comfortable in applying for any government assistance(despite assertions like this unofficial website) until I become a full US Citizen.

Faced with a circa $300 per month drug cost, I took an alternative route and was able to secure the best part of a years’ supply. Also, to get to this point, I’d spent probably 50+ hours trying to find alternative prices and supplies.

Like many other things, this is another example of the disgraceful profiteering in the US Medical for-profit business.

On the remainder of my medical billing, I’m about to give-up, the system has worn me to down, I just can’t waste any time or energy on it. In my last communication, I laid out specifically, in detail where the billing didn’t agree with what they’d told me the cost would be. Their answer:

Our financial aid has been applied and your balance is correct. If you have any other questions, feel free to contact our customer service team.

Which takes between 30-60 minutes per call since you have to go through multiple layers of call center and no one has any real authority to change anything which means they have to appeal to a “supervisor” and they never return calls. It’s time to pay them all off before they go into collection and hurt my credit rating.

Medical Billing update

After spending another hour yesterday making calls to try to come to a conclusion over the 2x appointments and treatment I had for my leg wound back in August and early September. I’ve been applying the lessons learned, experience I’ve had resolving my billing for my heart attack, which i close to, but not yet finally resolved. Here are some tweets I sent after getting off the phone yesterday.

The Real Reason Hospitals Are So Expensive

So much about this rings true, especially this segment. In essence I said I had no insurance and would pay cash. Most, but not all of my bill was instantly discounted by 60%.

I’m at about $38,500 now including follow-up, by minus drugs. I still have to work out how to pay that.

Doctors and Money

The NHS is funded(or should be) to take care of everyone to a level of minimum care. No one(in practice) should have to pay for any medical care.

One question that comes up regularly when discussing how to fix the healthcare system in the USA, is Doctors and Money. While Doctors are far from the only important people in a healthcare service, they are possibly the most visibly important.

It is often asked, or asserted, that if you had a single-payer healthcare system where Doctors were possibly salaried this would act as a disincentive, and over time you’d lose the best doctors to purely private practice. This belies the fact that experienced doctors in the British NHS can make additional money in private practise.

It also completely ignores the fact that while the NHS is a meets minimum, free at the source of treatment health service, there is a thriving private, and private insurance marketplace.

The NHS is funded(or should be) to take care of everyone to a level of minimum care. No one(in practice) should have to pay for any medical care.

However, these days the cost of drugs, the number of highly complex surgical procedures that are “standard” has grown beyond the normal funding of the NHS from say 20-years ago. Cancer care and the drugs for it now consume huge amounts of money, as does the treatment for obesity and the treatment of it, including heart disease.

If you are in a car crash, some form of violent attack, or other urgent care need, the NHS will supply an ambulance, emergency care, surgery, drugs, Dr’s, everything and you’ll never see anything related to billing or cost. Same for almost any minor health care problems, even many elective surgeries, and pregnancy, cancer care, pretty much any medical need.

Elective surgery does tend to get backed up, there are often long waits to see a specialist, as well as to get surgery. This depends though on the problem, the area of the country, and the time of year.

This time of the year the NHS is always stretched to and beyond its limit. It’s damp in the UK, older people tend to have been life long smokers and are very susceptible to respiratory illness. Both my parents died this way after a few weeks of gradually declining health as they were unable to recover from pneumonia. My Dads complicated by heart disease; my Mum a 7-year lung cancer survivor.

Both received 100% free NHS service, they were not rushed or hurried to move out of their hospital beds. The nursing and medical attention was top class. In fact, I’d go as far as to say  much better than here in the USA because there was never a discussion, question or insinuation that insurance might not cover something.

For those that a “meets minimum”, free healthcare service won’t do, you can always pay. Many companies offer private “top-up” insurance, which provides priority appointments, private hospital beds etc. And you can always elect to pay for the treatment you need need.

luton-news-sept-21st-1978I had two major hospital admissions, one on the NHS for a tib/fib fracture in 1978; the 2nd some 16-years later for corrective surgery. The 2nd I was working for IBM with top-up insurance. I saw the same specialist who’d saved my leg 16-years earlier. If I’d wanted to see him on the NHS, there was an 4-week wait; I saw him the next week at a local private hospital.

He recommended corrective surgery. On the NHS he would have done it in 4-6 weeks, depending on lots of things. I was able to schedule a specific day for 10-weeks out that better suited IBM’s schedule, private hospital, private staff, same consultant.

Fast forward to 2013. I’ve done over 100 triathlons and running races, including 6-Ironman races. Despite an initial prognosis in 1979 that I’d never run again. My knees are not so good. I wanted to see the same consultant, he is no longer practicing, wished me luck. I was recommended to the British Olympic Association’s Orthopedic Consultant. Chances of seeing him on the NHS, zero to very little.

I scheduled an appointment with him at Private hospital, flew to the UK, and he came in to see me especially. We spent the whole hour together, what I’d paid 450 UKP for. We discussed options, did measurements, x-rays, looked at different types of replacement knees etc.

He said that when I was ready for surgery to let him know, he would schedule me on his NHS roster and I could fly back. When discussing the same surgery here in the USA, he told me not to bother.

His experience had been that in the USA even dedicated specialist consultants didn’t have nearly the experience as NHS Specialist. In the USA they spend too much time consulting with patients and negotiating over billing. Patients in general take 3x as long to consult with in America because the options, cost and insurance options, and choices are so daunting and often when a preference is stated it has to be negotiated with insurance, co-pays, deductibles etc. all have to be understood by the Doctor and patient. The alternative is you get the Doctor, but little or no choice in replacement technology.

He has 2x 6-hour surgery days per week, they do 6-8 knee replacements per day; he spends 1-day NHS consulting, and 1-day private consulting and has 1-day open for Private surgery or additional consulting.. If he wants he can do private surgeries on Saturdays, vacation days or early mornings before NHS work. Average cost for NHS Surgery $0.

A US Specialist, according to him, does 6-10 operations per month, and my US research was cost around $30,000. In terms of knee replacements, the UK has much better insight, and much less medical device and insurance company influence on the type of replacement, they base their choices on OUTCOMES.

I’ll return to the discussion on healthcare systems shortly, but suffice to say, I’ll be going back to the UK when my time finally comes.