Alarmist and mistaken privacy debate

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We really don’t an high-sprung, alarmist debate on privacy. In Holland, this recently resulted in a shut-down of a system for sharing medical information that could have saved lifes.

If someone reads this: please help me comment this article. It is from the leading Swedish daily newspaper, written by it’s most influential columnist. And he got his facts wrong. It would be really bad for Swedish patients if these errors would spread. We really need systems for sharing health care information if we want to treat patients efficiently.

Agreement on terminology might be possible

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In this post I cited the EHR benchmarking report, claiming that difficulties in agreeing on common terminology is a major stumbling block in the deployment of eHealth solutions. It was quite a pessimistic post…

Today, I had a meeting with the CIO of SLSO – an organization employing a substantial chunk of the 25000 people using Stockholms TakeCare EHR system daily. She enthusiastically told me what happened when the primary and psychiatric care recently migrated to the same database that was being used by the hospitals. The health care staff on the floor quickly realized that there would be large gains in synchronizing the way they documented their information. Consequently, terminology harmonization soon started happening. It was largely a “bottom up” approach which seems to have increased compliance with the new vocabulary substantially.

So. Time to be a bit more optimistic!

Case in point….

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In may 2011 a part of the insanely complex NHS National Programme for IT (NPfIT) was violently slammed by auditors. In a debate following the report a Member of Parliament claimed:

 a teenager in their bedroom can automate an e-mail from one system to another, or to a mobile phone; all that is trivial these days

In a post yesterday I said:

Leaders centralizing IT-projects have taken on a mandate that the public has not given them. They do that because they lack knowledge.

Thank you, Ian Swelles, MP. What a great illustration of my point!

Who controls care? Six country comparisons and eHealth consequences

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I’m a Swede. My image of my home country is that it’s more state-controlled, centralized and regulated that most other places in the world. Especially places like the original free-trade champion England.

Well, time to think again. I’ve made some rough comparisons of the health care system in six countries in the diagrams below. Green means private, blue means public. Dark blue is state.

Hospital financing:

Hospital ownership/control

Fact:
The UK is far more state-controlled than any other country. As a consequence, IT-projects are more centrally controlled than anywhere else.

Fact:
Standish Group long ago concluded that small size was directly correlated to success in IT-projects.

Not surprising result:
The NHS National Programme for health IT in the UK is probably the most critized IT-project in the history of mankind.

The organization of health care probably reflects public opinion reasonably well. In these countries (except Holland), people generally feel it’s a good idea to to have strong public control over hospitals. Therefore, politicians have constructed such systems. And I am not going to argue with that.

However, citizens don’t care about how IT-projects are controlled. Leaders centralizing IT-projects have taken on a mandate that the public has not given them. They do that because they lack knowledge. They haven’t learned the lessons that everyone in the IT-industry have learned since the sixties (you have read The Mythical Man-Month, right?).

What can we do to, for once, learn from our history?

Google Health closes. Are PHR:s dead?

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Google Health closes down next year. The reason is lack of interest:

There has been adoption among certain groups of users like tech-savvy patients and their caregivers, and more recently fitness and wellness enthusiasts. But we haven’t found a way to translate that limited usage into widespread adoption in the daily health routines of millions of people.

At CompuGroup Medical, we really believe that Personal Health Records (PHRs) are a good idea. In fact, we believe it so much that we have invested in patented technology to keep them really safe. This includes clever PKI technology that ensures that only the patient and whomever the patients allows can access it (not even db-admins).

Shahid’s take is that the value is simply not there in the Google’s version of a PHR. People are not interested in just keeping score of a bunch of measurements.

I think this this an important signal to us working with PHRs. We must not be blinded to believe that users will come running just because we bring out a nice and clever web site.

I’ve started talking to customers in Sweden about our Software Assisted Medicine (SAM) concept. This is currently in pilot testing for diabetes patients in Germany, and has been approved according to Meaningful Use in the US. The system has the capability to include everyone involved, including GPs, specialists, medical guideline-makers, insurance companies and – of course – the patient. It is integrated in the EMR and makes recommendations according to nationally accepted medical guidelines based on medical data and information from the patient. It can keep track of self-treatment programs, appointments etc.

Implementing such a system will be challenging because it involves many parties. But we think we actually can pull it off because we have EMR’s in place with huge amounts of usable medical information (for example CGM TakeCare in Stockholm with 2,5 million patients in one db).

There is still lot’s of opportunities to breathe life into the PHR!

What stops the use of eHealth?

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As I said: our systems are not put their best use. Why?

The eHealth benchmarking study gives some clues. According medical directors in Europe the top 3 percieved barriers are: system incompatibility, getting people to agree on terminology and security. Financial concerns are right at the bottom.

This is fascinating for several reasons.

One reason is that incompatibility and security is relatively easy to solve. At least if you don’t place your demands unreasonably high. Mapping data between systems is not always fun, but my experience is that it’s doable. And getting a decent level of security is possible in all systems I know of. But it does take quite a bit of commitment from the customer.

Another reason is that discussions with customers so often focus on price and relatively unimportant bits of functionality. None of which, obviously, are big barriers.

Maybe the basic problem actually is what I hinted at: making eHealth systems useful requires groundwork in the customer’s organization. And we suppliers aren’t ready to help them with that. We are not staffed and we don’t have business models to handle it.

Suggestion: a little less focus on selling software, a little more on selling services. That may improve outcomes quite a lot.

Are our systems useful for patients?

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eHealth is all the rage. A lot of us who build and implement it really, honestly, believe it does more good that harm.

I do too. But the truth may be that the usefulness of eHealth is hard to prove. At least when it comes to improving health. One new study (a review of reviews) finds it hard to show any usefulness at all. And in this study from EU, medical directors are pessimistic about treatment impact:

So, we should stop spending money on this, right? Is it better to channel IT-spending into employing more doctors and nurses?

I don’t really know. What I do know is

  • I could write many pages about the benefits of the systems I’m involved in building (access to data, decision support, process improvements etc, etc)
  • Everyone I talk to and read really believe that eHealth can bring improvements
  • None of the above benefits are actually reflected by academic studies

They say that 50,000,000 Elvis fans can’t be wrong. Or can they?

 

They don’t use our stuff

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One of the many conclusions in the new big eHealth Benchmarking report is that EHR:s are in place but their usage is low.

Amen to that. We suppliers see it all the time: the things we build are not used. Sometimes, of course, they’re badly built – we have lots of areas to improve. But it is very common that even our best stuff simply isn’t implemented on the floor.

My opinion: there is far too much focus (ie resources) on developing new functionality compared to the focus on reaping the benefits of the systems that already exists.