I’m extracting this from my previous post into a separate one. As I say below, payment policy isn’t my focus, but what happened in this session is an important example of the difference it makes when patients are running the show and dominate the audience. Don’t jump to conclusions until you get to the end.
Whoa: this subject has caused eruptions among the patients in the audience. After the speakers finished (see below), during Q&A an audience member explained what was really going on, which had not been made clear by the (non-patient) panelists. An audience that had been silent all day became a small roar:
“You are out of touch with reality: look downward, at the lower parts of society!”
“We have a child with a brain tumor – he had surgery … we have no insurance card, and he has complications and now he cannot get surgery!”
Any of this sound familiar in the U.S.? Yes – but you don’t generally hear it said loudly, by people who feel the personal impact, at conferences.
The subject was the European Directive on Cross Border Care, which gives insured patients the right to go get care in another member country. The details of this policy are over my head, but in some ways the arguments are familiar in the U.S.: speakers on the dais gave talks about important new things that are possible, but to the patients in the audience it’s a whole lot of BS, because if you can’t go do what the speakers are talking about, it’s a waste of time:
“I’ve been listening to you since morning and it’s all for nothing”
“It’s not possible to do this, so what difference does it make??”
This is what you get when a conference is created by the ultimate stakeholder, instead of the conference organizer bringing in a few to hear what they think. But I’m still not sure why there aren’t more patients speaking on the panels!
9:02 a.m ET update
During the coffee break I learned what the patient uproar was about. (I’ll welcome corrections on any of this – it’s a new subject to me and it’s not my area of focus.)
The Directive gives citizens of European countries the right to get services in another country. What was not said from the stage was this: when you get care abroad and come home, you only get reimbursed at your home country’s rate.
Greece is in an economic disaster, and prices are predictably low – “a small fraction” of prices in other countries, I was told by two different people. You’re still responsible for the difference. So, boom: you’re right back to where the only solution is to have private insurance for care beyond what your home government offers.
But if you can afford private care at home, who needs to go abroad? It ends up only being a benefit for the people who don’t need it as much. (Greece has 28% unemployment – comparable to America’s Great Depression 80 years ago.)
Hence the quote above, directed at a government official: “You are out of touch with reality: look downward, at the lower parts of society!”
That was the woman with the brain tumor child.
The e-patient takeaway
As I said above, this isn’t my area of focus – I talk mainly about patient engagement in the clinical encounter. But Let Patients Help does touch on money – the section “Ten Ways to Let Patients Help” includes these:
5. Let patients help control the cost of care
6. Let patients vote on what’s worth the cost
7. Let patients use their informed shopper skills
And here we saw a big room of patients engaging in understanding the rules, to be responsible for getting what they need. So I’ll comment:
The real issue I witnessed is that if health policy people aren’t in touch with citizens’ street reality, they can’t possibly serve those citizens – and they probably won’t be able to explain the policy clearly. So the truth – “what we just heard doesn’t actually pay for much” – was said by someone in the audience, and the rest of the audience got mad. And the policy people were surprised.
Last night before the conference Kathi Apostolidis said she learned long ago that it’s very important for activists to get involved very early in policy, because after the ship leaves the dock it’s hard to change its course.
How often do we have to say it?
- Involve the ultimate stakeholder in everything – including difficult trade-off decisions. Don’t assume you know what the ultimate stakeholder would prefer, in difficult times.
- Patients – get involved proactively! Don’t wait to be asked. In an earlier session Nikos Dedes recalled the AIDS movement thirty years ago: stand up and say what you want! Don’t depend on policy people to see things from your point of view.