Throughout this campaign, I’ve stated that healthcare, specifically healthcare information technology, is my personal passion. It is part of the core mission of my little startup company to empower patients to succeed in “Getting Health from Healthcare” by securely sharing their health data with their healthcare providers to make decisions that drive the best healthcare outcomes that are in line with their values. At the same time, especially with my goals for the State Legislature, another aspect of my work in healthcare has been to work to lower healthcare costs which would help us close our state budget gaps, provide stimulus to our economy, and allow businesses to pass along those savings to their employees as wage increase and/or improved benefits. When I get too far into the weeds about this subject, I see many sets of eyes glaze over above polite smiles. But as much as I come off as technocratic and too focused on technology and healthcare finance, there is a human story underneath all of that.
What I’d like to share with you now are some of my personal experiences with the healthcare system that are at the root of my quiet, but focused anger that fuels my deliberate and relentless pursuit to improve healthcare. Daniel’s Story is the birth story of my son Daniel, warning: this a sad story and may trigger strong feelings. Amelia’s Story is the birth story of my daughter Amelia, it is a scary story with a happy outcome.
What both of these stories capture are critical moments where the healthcare system did not work at its best. With Daniel, our doctor couldn’t be bothered to be face to face with us as we had to made our saddest decision. And we had to make that decision in the absence of the best information even though we wanted to know everything we could. To this day, I wonder if the “fern” test was accurate because when Daniel was born the amniotic sac was tight didn’t appear drained at all. At the moment, I didn’t know what I could do or how to speak up for us. I’m forever haunted by the thought that there was more that we could have done and whether my silence made a difference. Later, I spoke to a different OB and she said that our choice was reasonable and that there was not much of a chance that he would survive either way and even if he did he would be blind and deaf and probably struggle to breathe his whole life. Our doctor should have been there with us to answer our questions and help us know and come to accept that we did all that we could. For him, in his vast experience of thousands of births, it was an ordinary case with a negative outcome. For us, we were newlyweds with our first child and it rocked us permanently.
With Amelia’s birth, I am furious that we nearly lost our daughter due to a failure to pull together the right information. I am floored that the perinatologist’s report never became an identified concern in our electronic health record. We, as patients, knew about the concern because we’d read the report and we assumed that such an important detail would get to the right provider at the right time. But for all of the advances of the electronic health record with its ready access to information, we still need for patients to know to speak up for themselves and be their own best advocate so that they can help doctors do their best rather than be passive recipients of care.
For life and death situations which occur everyday at the hospital, we need healthcare to be its best for everyone all the time. How healthcare works in critical situations is the real-world practical expression of society’s sense of justice and equity. And the hospital where these events occurred is one of the best around. I know because I worked there as a director and personally witnessed everyone from the leaders in the C-suite, to the clinicians who save lives, to the stockroom clerks who make sure that everyone has what they need. At each level, there are good people working together trying to do the right thing. So what’s wrong and how do we fix it?
You could fill a multi-story library building with books and journals dedicated to explain how to fix healthcare. The truth is that so many smart people have studied what’s wrong with healthcare, devised solutions and have even piloted them in real practice. Sometimes, these experts, with their fancy degrees, are too inclined to dress their ideas up in fancy jargon and complexity. So, for the rest of us, here are some simple principles.
- You get what you pay for — Why do you sit in a doctors office waiting more than an hour to talk to a doctor for 5 minutes while they type into a computer keyboard. Because that’s what they get paid to do. All of the absurd situations in healthcare track back to either a) that’s how they get paid or b) that’s how they avoid getting sued. So let’s get much better at paying for the right things.
- An ounce of prevention is worth a pound of cure — We could save billions of dollars and live vastly healthier lives as a society if we followed the [not so] magic secrets of health: eat right, exercise, relax more often and don’t smoke. Diabetes, high blood-pressure, cancer, heart disease, and lung disease could be dramatically reduced with the magic secrets of health. Technology will help us form a better partnership with our doctors and engage with our health more effectively. It is part of what I’m working on with a patient owned electronic health record.
- In Washington, the 80/20 rule is more like 72/5 — From the all payer claims database, we learned that in a recent year, 72% of healthcare claims come from 5% of people. What this means is that if we focused solutions in housing, transportation, chronic disease management, etc. on this 5% of folks, we could significantly reduce costs and significantly improve some peoples’ lives.
But here’s the most important principle, there are some key players who are making a lot of money with things staying just as they are. But as a voter, you have to the opportunity to choose to have a Senator who only works for YOU. If you compare donor lists between our current senator and myself, it should be clear who works for drug companies versus who will bring you better healthcare and lower prices.
Originally published at https://citizenbell.com on October 24, 2020.
