There have been a lot of conversations on Health Care IT topics; specifically, Electronic Medical Records and related things, recently the conversation has come to a number of places that have caught my attention. These sites have perspectives that I find interesting, some have been directly involved with Health Care IT, some less so, all of us as patients/consumers.

Francine Hardaway has some experience and interesting things to say in a number of posts, over at Huffington Post Are EMR really the answer? and , talking here about how President Obama has Health Care IT on the radar, and her personal experience. More recently, she talks about how it can be done wrong. I generally tend to agree with Francine, but bring some slightly different experiences to bear.
Of course I had things to say in the comments of each post, and these together make up a more complete picture of my view of the challenge, some ways to do it, and ways to not do it. I’m consolidating them as there was a lot of overlap. I don’t believe that I have unrealistic desires, I want things to work for all of us.

• As a patient/consumer, I really want to be able to take a CD from my current Dr, hand it off to a new Dr, and not get looked at as if I had 3 heads.
• As a technologist, I want the data to live in a way that is clear, concise, and portable.
• As a citizen and worker in the US, I want this country to again have a leadership role in thought and practice of Health-care Delivery

There are a few things that seem to be obvious to me.

• We aren’t doing much right in how we communicate. Really, have you had a conversation with the insurance specialist at your Dr’s office lately? It’s like they are speaking Klingon.
• We _must_ have standards, that’s one of the few things that we can largely agree on. We don’t have to agree with every last detail of those standards, we just have to know that standards are how we come together to better deliver the goods.
• The current model of Health-care Delivery is unsustainable

There are so many opportunities to improve, but let’s focus on one area here, information management.
There are so many things that _can_ be done, by so many, fed, state, individual, AMA, all the way down to individuals. I advocate one thing from the federal government as a first step. Standards! I believe that standards that promote interoperability are a significant part of all of these things.
There is a lot of room for debate about what the role of the Federal Government is, but I don’t think that many would argue that leading the charge for standards in operation and interoperability isn’t something that government can’t do, in fact I would argue that government is uniquely positioned to do just that, lead. I see standards as key, and Fed Govt as the one to manage standards, then once in place bring providers to them with both carrots and sticks. By making the large, (VA, Medicare/Medicaid), government agencies use them, then take all opportunities to apply leverage to business and standards bodies to adopt those standards if they wish do do business with those agencies they must work with those standards. We can jump start the adoption of these standards. I think that there’s a real chance to create jobs, and open up the market some. We can not only deliver better service to the consumer and reduce mistakes, but we can save money too!
How standards are implemented in software is the part that conflicts with corporations maximizing profit. Corporations have a single motivation, earn large profits. The software business is somewhat unique in that the first copy of software is very expensive to create, all other copies are nearly free, just media shipping and sales.
There are some islands of standards, PACS and RIS are such systems, I worked for a hospital in the mid 90′s we had PACS then, surely it’s been around long enough that we should have stable standards in place. In fact I’m sure that in the PACS arena it is stable, but what about getting things out of that island? The things that I have seen done to get different systems to communicate are reminiscent of “tin cans and strings” mechanisms. Interoperability in the medical software field has never been great, I think that’s one of the key problems with adoption. Clearly there are other important reasons, but I think that the ability to achieve relatively straight forward interoperability will help make these others lower barriers.

It’s been a while, over 10 years, now since I worked at a hospital, now its a bank where I earn a living, many things are eerily similar. Craplications abound, there are a few categories of these things that cost a relative fortune, but are worth just a tiny fraction of that if anything at all.

There are small standalone niche products, they tend to get bought and forgotten about for many years, until it completely fails and there is no company to be found to support it, and the people who implemented it are long since gone. The only people around who know anything about it only know how to prop it up, and the cost to replace these products is prohibitevly high

There are a small number of really large providers of software, that provide solutions to the vast majority of hospitals. These are ripe for standards compliance moves.

Then there’s the kind of thing that Francine is talking about in one post, the GE product is just one example. This is rampant in large scale software from large companies. Really big companies like GE don’t make software, they go out and find components and bind them together with bubble gum and bailing wire. There’s actually an advantages to this strategy, (well, if you are the seller it’s an advantage)

• There’s nobody on the planet that understands the whole thing enough to support it.
• There’s nobody on the planet that understands the whole thing enough to replace it.
• There’s really good money to be made in services installing, maintaining and upgrading it
• Once the fish, er customer, is hooked it’s nearly impossible to move off of this platform

Quite often the support models of large packages call for annual contracts to pay for the support of the very product that you just paid millions for. It is not uncommon for the annual support contract to be 10% of the cost of the software. Then if you want to make significant any changes to the configuration of the product it is further consulting time, charged by the hour, frequently at rates over $200 per hour, plus hotel and other travel costs.

By moving to standards based inter-communications we have a chance to flatten some of those speed bumps. Independent certifications and training would enable more people to become fluent in the tools and procedures to bring suites of applications together into a EMR system. By having well defined standards we will be able to have single repositories for a person’s health records, and all of a hospital’s applications can leverage that. Imagine your health record as the hub of all of the communications, all departments, and external entities managing the parts of that record that they have valid data for.

There is a very interesting podcast, Data Finds Data it took more than one listen to this for me to feel like I had gotten the all points out of it that I would, it’s worth a listen.

But, of course I’m an IT type, that’s my perspective.

This is a personal story that starts out scary but has a fairly happy ending.

I’m quite certain the ending would not be as hopeful were it not for the healthcare benefits available to federal employees, elected federal officials, and their families Even with those benefits, the ending may still not be so favorable under the current models for “managed care, if not for the other life experiences I am about to share.

I survived a spinal cord injury in 2003 and I’m very fortunate that it was not the kind of spinal cord injury that leaves a person permanently paralyzed. I did lose my ability to walk for a period and I was unable to use my hands for awhile, except for balancing things with assistance from my thumb and first two fingers. Obviously, I couldn’t drive so I was totally disabled and unable to work at any kind of job. Fortunately for me, my job as an Environmental Public Health Specialist came with Long Term Disability insurance as part of the compensation package. It was a State government job. Such compensation keeps government agencies competitive with private employers or I would never have accepted a government job back in the 1990s.

The private company I where I worked prior to that as a Research Scientist also included LTD insurance as part of the compensation package. The drawback of working for that company was a very lax attitude toward routine safety precautions and OSHA requirements. While that wasn’t true for most of that company, I had transferred to a department where that had been the norm. So I was quite happy to leave the private sector to become a government specialist in environmental public health!

I’m not a young woman, so my professional background is quite diverse. That has turned out to be a fortunate thing with regard to my recovery from the spinal cord injury. I majored in chemistry as an undergrad, financed by grants and scholarships. To supplement that other financial aid, I was employed by Washington University as a part-time Clinical Chemistry Technician at St. Louis Children’s Hospital. For about 3 years after graduation, I worked at a research institute as an Associate Research Biochemist in neurochemistry and neuropharmacology before deciding to pursue a Ph.D. in Biochemical Pharmacology at the University of Missouri-Columbia. This experience in the 1970s gave me a lot of exposure to what healthcare delivery was like before the era of managed care.

The next few paragraphs will sound like a sob story. It is not. It all ties together as a perspective of how the current healthcare system in the US has evolved into what it is now with a possible solution for the current US Health Crisis.

In 1980, job prospects for Ph.D. pharmacologists and biochemists were becoming dismal. Two weeks into my first semester in the graduate program, the Chairman of the Pharmacology Department informed us new students that he and his large, esteemed research team were transferring to another university. So his team, a third of the department, left. Another third of the department took his offer to transfer with him as a bargaining chip to land better jobs elsewhere. None of the entering graduate students followed him, so we all wanted to work with the remaining professor who was reputable and had funding.

That one professor happened to be the main reason I had chosen this program, along with the fact that I would be living only two hours away from my aging parents. First semester was tolerable but financial aid on this campus was not what it had been in St. Louis. That made the second semester terribly difficult and, besides that, my elderly parents were beginning to have major health problems. So I left the Ph.D. program.

That year was not a total loss. I was still able to complete enough work in the research (non-classroom) part of the program to be included as third author on what would turn out to be my final scientific publication for a major medical journal. Things I learned in the course of doing that work would turn out to be helpful when my own medical crisis occurred in 2003.

After leaving graduate school, I took the registry exam from the American Society of Clinical Pathologists to become a licensed Medical Technologist in Clinical Chemistry. By doing that, I thought, it would be more likely that for the rest of my career I would be able to work where I wanted to live, rather than live where I could find work. I decided to stay in Columbia and work in the Clinical Pathology Lab. at the local VA Hospital, where I met my husband. I’ve done other work since then, some related to medicine and some not so much. One job included scientific/medical analytic instrument sales, which added another dimension to my knowledge about healthcare costs.

The reason I’ve included the detail up to this point is to highlight part of my experience with the inner workings of science and medicine. Of value is that I was able to see how it all worked together, ultimately for the benefit of patients prior to the mid-1980′s.

After the early to mid-1980′s, things changed dramatically. There was no such thing as a degree in Hospital Administration prior to then. Medicine was not a “for-profit business” and pharmaceutical companies didn’t subsidize medical schools and graduate programs in the medical sciences like they do now. The Clinical Laboratory Improvement Amendments of 1988 (CLIA) enacted by HCFA (the Health Care Financing Administration) were not yet in existence. Life in the clinical laboratory, as well as everywhere else in medicine, changed dramatically when CLIA was enacted. In my opinion, the change was not for the better in terms of patient care.

Lucky for me, all of this prepared me for dealing with my current health challenges. I had become familiar with how the existing healthcare system worked and had the opportunity to watch it evolve to the mess it is now. I gained sufficient scientific and medical knowledge to know what treatments should be available and, more or less, how to raise hell when it wasn’t being offered. I had enough of an understanding of biological systems to know that patience, perseverance, and a positive attitude are needed to allow modern medicine to work its magic.

Also lucky for me, my husband and I changed our health insurance after I left my job as a Research Scientist for the private contract R&D company where I had been working in the early 1990′s. We’d each carried our own individual coverage through our employers prior to that but we decided it was a good idea to add me to his insurance policy at the VA. His was the same kind of policy that I’d had when I worked at the VA after graduate school but, with me added, it was a Self-and-Family plan. There was no waiting period for any pre-existing conditions, had I had any when he added me to his health insurance policy. The small, additional cost was the same for adding just a spouse or an entire family.

The trauma of sustaining a spinal cord injury comes with an array of problems, some of them medical and some of them not. Neurosurgeons don’t work cheap, but I was not even required to pay a co-pay except for my initial consultation. Neurosurgery, MRI’s, CT’s and physical therapy are not cheap, yet all of that was covered up to a point. Any “additional” physical therapy required a $15 co-pay, same as a doctor visit. This year, our co-pay has increased to $20.

Neuropathic pain is something that goes with a spinal cord injury all through the recovery process and, possibly, beyond. Traditional medicine can only do so much but non-Western medicine has its own magic. Acupuncture helped me to a great extent and it was covered by our health insurance through the VA. The acupuncturist I chose was not on the list of preferred providers, so I was reimbursed 60% for each visit.

Had I known which ones were on the preferred provider list, I would’ve paid $15 for each acupuncture visit. Physicians (MD’s and DO’s) who weren’t on the list would have been reimbursed at 80%, but I’ve only encountered one physician who I ever wanted to see who was not on the list. The only reason he wasn’t was because he had plans to retire the following year so he didn’t fill out the paperwork to be included for that final year he was my doctor.

The VA (Department of Veteran’s Affairs) offers its employees the same health insurance offered to all other federal employees under the Federal Employees Health Benefits (FEHB) program. There is an array of health insurance companies who choose to participate and, as far as I know, any insurance carrier is eligible to bid on being included in the FEHB plans offered to federal employees every November.

Both HMO and Fee-for-Service plans are offered. HMO plans are usually more restrictive than Fee-for-Service plans in different ways. This year, there were 43 pages of HMO plans offered and 18 Fee-for-Service plans for each of the thousands of federal employees to choose from. The HMO’s are regional plans with specific service areas. That partly accounts for the fact that there are pages and pages of them. The Fee-for-Service plans are all available nationwide or, in some cases, world-wide.

Another caveat is that not all federal employees are created equal. Postal Employees are charged lower premiums but have the same selection of health plans. Federal employees working for the Foreign Service have some benefits not available to most others. Members of Congress and their staffs have a similar but different set of benefits that used to be more clearly outlined than what’s immediately apparent on the FEHB web site now.

The good news is, the structure for “universal” health insurance exists and it’s NOT a single-payer system. There is no waiting period for pre-existing conditions, at least not with the plans my husband and I have had. It doesn’t exclude any insurance company that is willing to meet the requirements to compete for the large pool of federal employees. Adding the rest of us would only increase the size of the pool and SHOULD lower the premiums paid by all insured individuals.

The bad news is that costs are still rising. Healthcare providers who remember how things were prior to HCFA are retiring. Insurance companies had a big hand in writing the HCFA regulations and continue to be the “experts” consulted when writing new legislation. Pharmaceutical companies are staffed but not run by medical researchers and those who worked for them prior to HCFA are also retiring or being given “golden-handshakes.”

One challenge is that youthful experts have never known healthcare delivery to be any other way than how its been for the past 20 years. Another challenge is that greedy players who know how to game the system are in the best position to have the most influence.

The BOTTOM LINE is that the infrastructure for first-rate healthcare ALREADY EXISTS for those insurers and the uninsured or under-insured who desire to participate. Our job is to do what we can to remove the barriers that prevent it from being available to the rest of us.