Last nights #hcdr discussion revolved around patient engagement and the role of government. It was a lively exchange!

Previous chats have shown that the definition of patient engagement is not yet well formed. To some the term is synonymous with “patient portal” and HCIT in general, whereas to others it means access to data and joint decision making. I ascribe to the latter school, and as I thought through last night’s chat topics I decided to tease this idea out in a new direction. Here’s the core idea:

The financial component of decisions you make with your care team is critically important to the outcome, and true engagement has the patient understanding the cost of their care.

If we look at current state, it’s impossible to under understand what you’re going to pay for your care today. Your doctors don’t (and shouldn’t?) know, your insurance can’t tell you, and the billing department in the hospital just tell you that you are liable for all costs incurred. It’s a distressing situation.

Let me give you a case from personal experience.

One wintery day I was out playing with my son out on a snow bank. He was four years old at the time and a bit of a handful, but it was clear that something wasn’t quite right with one of his knees. As the play went on he became a little teary and asked me to carry him home. This was very out of character so we we went to his pediatrician’s office. His pediatrician who is a fine doctor said she suspected RA, but could not rule out a septic joint. Off to the hospital.

We arrived at the ED and after the obligatory wait he was placed in a bed. By this point his knee had swollen up to twice it’s normal size and he was very uncomfortable. We were eventually admitted to a unit and left to wait the arrival of a team of doctors.

Over the next ten days the infectious disease and rheumatology department went back and forth over the diagnosis. Daily tests were run, the joint was tapped, operated on, and MRI’d under anesthesia. Vancomycin was given by vein. Finally, the RA team came in and said “well I guess he’s going to be an RA kid”, and the diagnosis was made.

As a parent I was deeply involved in decision making, and as I worked in an imaging lab studying RA I had a pretty good idea of what care was needed. I also had access to a network of professionals who I could run ideas through. How better empowered could the patient advocate be?

What I didn’t know through this process was what the cost was going to be. When all was said and done I received a bill for $65,000 with a completely indecipherable list of charges. Fortunately we had excellent insurance, so I paid my deductible and thought no more of it.

A year later I went back and looked at the cost for the MRI which was $11,000 dollars. The exam was performed by a colleague of mine who explained to me that $9,000 of that went for the cost of pediatric anesthesia. To this day I’m still absolutely amazed that this cost about two hundred dollars a minute.

Was the MRI absolutely necessary? Nope. It was positioned as a safety net to ensure that everything was taken into consideration. A wait and see approach probably would have produced the same results with minimal cost, but which parent would go for that? None. Unless you explained the cost … and then some would have to.

To me, patient engagement involves knowing what the cost is and making decisions your family can afford. That’s kind of a hard way to look at things, but with many families descending into medical bankruptcy it’s a very real perspective.

Portals are really great. I love being able to look up lab results to see that my kid’s sed rate is under control. I wish there were tools to help people like me understand costs in the same way. Even an estimate of costs would be an excellent start!

So, where to from here?

First, government has a role in making prices transparent. The market has not regulated itself and an opaque system is the result. It’s time for the government to legislate and fill the gap.

Transparency should be proactive and reactive. On the proactive front, we need websites where we can go to lookup prices and outcomes in our geographical area. These could be commercial entities with tax breaks from government to get them started.

Reactively, I’d like to see hospitals being required to have someone who can visit the bedside and explain costs to the patient or their advocate. A financial aid counsellor of sorts. I see this as an optional service for patients who had no chance to use the proactive approach.

These are obviously controversial topics. If you don’t like government intervention you probably won’t agree with me by default, but think about my experience before you apply the political filters. The free market system hasn’t really worked, and a change is needed.

To conclude, as with every other aspect of life, money affects decision making in healthcare. True engagement requires some form of financial transparency and counselling.

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