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.

Any meaningful effort for health care reform has to include the participation of the IT community and continued progress toward electronic health records, streamlined claims procedures, and ability to disseminate public health information efficiently. The National eHealth Collaborative aims to partner the public and private technology communities to create a “secure, interoperable, nationwide health information network.”

From their press release:

The National eHealth Collaborative brings together these stakeholders to accelerate development of the health IT systems, infrastructure, standards, protections, participation, and education needed to create a secure, interoperable, nationwide electronic health information network. The Collaborative provides a needed and credible forum for stakeholders to transparently vet and prioritize national advancement efforts and leverages the value, resources and best practices offered by both the public and private sectors. The Collaborative works in close partnership with the Health Information Technology Standards Panel (HITSP), the Certification Commission for Health Information Technology (CCHIT), and the Nationwide Health Information Network (NHIN), as well as other health and IT member organizations.

The complete list of their directors is here.

Here is a list of their goals:

• Consistent standards to guide the development, sharing and updating of confidential individualized health information within a secure national network;
• Education, guidance and incentives for widespread adoption of electronic health records by health systems, health professionals and individuals;
• Creation of the secure, interoperable network that enables immediate, consistent, protected access to relevant personal health information at the point of care, anywhere and anytime it is needed;
• Collaboration among a wide variety of institutions and organizations to enable broad, efficient, seamless and confidential exchange of secure, individualized health information—leading to system-wide improvements in health outcomes, access, and quality of care, as well as reduced costs over time; and
• Partnership with members of the Nationwide Health Information Collaborative and others to develop a governance plan for the Nationwide Health Information Network.

While I view this as a positive movement toward health care reform, their board members seem to come from insurance companies and corporate interests, with no representation from the technology sector. Shouldn’t companies that actually create the platforms be a key player in the discussion?