Power to the Patient!
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Last July I participated in a workshop on life after cancer at the National Academies of Sciences, Engineering, and Medicine in Washington. They’ve just published the final report, Long-term Survivorship Care after Cancer Treatment: Proceedings of a Workshop. It’s a free 160 page PDF.
Video of the first episode is below.
Last updated April 10, 9:30 pm ET.
Regular readers know that among my various causes – patient-centered care, patient access to our medical records, etc – is the importance and challenge of managing our health costs. For years I’ve blogged about my own experience – see the list of posts below. Occasionally I’ve blogged about my friends at ClearHealthCosts, who have been busting their butts to … well, make health costs clear. And for years I’ve wished we had more public attention on this crazy situation. Because when costs are chaotic, it can be hard to get the care your family needs without getting hurt in the process. How ironic is that?
So I’m thrilled to say that WVUE in New Orleans (“Fox 8 NOLA”) started a new series April 5, “Cracking the Code: The Real Cost of Health Care,” followed immediately by a print series by the Times-Picayune‘s Jed Lipinski. 
From what I’ve seen so far, each is spot-on. ClearHealthCosts is a big part of the project.
To my surprise a simple Skype interview that I did was used in the first TV episode. I can’t wait to see more.
It’s all new so for the moment I’m quickly adding this page to my site … I’ll update it when I can. For now, here’s video of the first episode, and below are my past posts on health costs. I hope it helps.
FOX 8 WVUE New Orleans News, Weather, Sports, Social
You can also browse my entire cost-cutting category.
4/12/16: The difficulty of shopping when they hide the facts: that skin cancer RFP in the NY Times
9/11/15: Article in USA Today soon with my opinion on costs, and online advice
3/11/14: How much should/could this pathology cost? (Skin cancer biopsies)
2/7/14: A new era: the “consumer-patient,” via Inquire Healthcare
6/5/13: “Chaos, behind a veil of secrecy”: Show me the cash flow
4/25/13: The reality of shopping for health insurance (pre-Obamacare)
3/25/13: An encounter with the Swiss medical system
3/11/13: The Big Ugly continues: “Hospital charges bring a backlash”
3/4/13: Let Patients Help, Cost-Cutting Edition: “Chaos behind a veil of secrecy”
1/6/13: Pricing visibility – video interview with HealthWorks Collective
12/11/12: Reprise: The healthcare waste pit is BIGGER than the fiscal cliff.
11/11/12: Great Robert Wood Johnson video “This Cost How Much?”
10/1/12: Perceptions creating reality: the scapegoat dynamic and the role of the patient
6/16/12: A dermatologist responds: “Who the heck is charging $3000 for Mohs first stage?”
5/21/12: Raw numbers for treating my basal cell carcinoma at three hospitals
5/10/12: Decision: Just scrape it off. (“ED&C”)
3/25/12: Let Patients Help, Cost-Cutting Edition, Part 3: Shopping for my next CT scan
2/20/12: It turns out being an engaged patient/consumer takes time.
2/11/12: I’ve started an RFP for my skin cancer
2/9/12: Time to practice what I preach: I have skin cancer again.
1/9/12: Let Patients Help, Cost-Cutting Edition, part 2: Shingles vaccine
11/5/11: Let Patients Help, Cost-Cutting Edition, part 1: a bill.
I was interviewed recently by USA Today reporter Laura Ungar of the Louisville Courier-Journal. The story ran Monday 9/14 in that paper and will be in the national USA Today soon. (I expected it on Tuesday 9/15 but it’s not there.)
The subject is summed up perfectly by the headline: Wildly varied health costs a national mystery.
Regular readers of this blog are familiar with my years-long series of posts Let Patients Help: Cost-Cutting Edition, especially my efforts to shop responsibly to get a skin cancer treated. If you’re not familiar with it, and you have the stomach for it, sit back with a cup of your favorite beverage and start digging. (For a shorter version, read the final post, which is pretty unsettling.)
Why do I ask you to read it? Because I believe this is important to the future of health(care) in America. We must put an end to this crap. Providers, give us the facts! Tell us what things will cost, so we can decide what’s important to us!
Good providers who are trying to do a good job at a good price simply cannot win our business in an environment that, 9 years after the original article in Health Affairs, is still best described as that article’s title did: “Chaos behind a veil of secrecy.”
Can you believe that this situation is tolerated and nobody is getting busted? As I told Laura in the interview:
There can be no explanation other than some secret malarkey going on. …
I feel disempowered and disrespected, because aside from the incredible cost crunch we’re all experiencing, it’s a downright sin that my family can’t readily find out what the options are and what the costs are.
During my illness, my patient community at ACOR.org (now SmartPatients.com) played an important role, but it’s not easy to find a good community for most diseases. (For instance, the most common cancer in the world is skin cancer, and I haven’t found a single smart, active community for its patients.) So several years ago I started a Patient Communities page on this site, to collect whatever information we can find. Maybe someday we can get some funding or a volunteer team to organize it better, but for now (as patients always do) we’ll make do with what we have!
Last week in Vermont, at the VITL health IT conference, after a workshop session, audience member Damon Lease said he’s found several different communities for prostate cancer, and found that each has its own personality. In my view that’s no surprise – people are different, and there’s no standardized way for communities to form and grow. Consider the diverse nature of the groups Damon found, on this one disease. From his email: [Read more…]
Yesterday I blogged about my business’s fifth birthday … and this week, it turns out, marks six months before I turn 65!
And that means I go on Medicare.
I’ve learned enough in these five years to know at least two things:
There are signs of hope, such as ClearHealthCosts, but although I work for change, I’m not waiting for the posse to save me.:-) I’m gonna be pro-active, engaged, empowered, responsible! I want to get educated, because I’ll be on Medicare for the rest of my life. And I want to approach the education from the patient’s perspective … not what the system wants to tell me, but what people like me have found necessary.
I do know these things about Medicare: [Read more…]
One of my most potent, visionary, and interesting clients this year was back in February – St. Luke’s Health System in Boise. (Did you know Boise is pronounced Boissy, not Boizey?)
I could say a lot about the time I spent working with them. Their CEO David Pate had heard me speak a year earlier at a small CEO roundtable, and subscribed to this blog. When I posted my RFP for my skin cancer, he wrote and said “I’ve got a proposition. Come do your talk as Grand Rounds, and we’ll do the surgery for free.” I said “Thanks but no thanks – but since you asked…” and we started a discussion that led to a multi-day engagement, working with their leadership team and giving a keynote to a big leadership meeting last winter.
I subscribed to his blog too, and in today’s feed is a fascinating story: Learning from the 20th President. That president was Garfield, who died 132 years ago. He was shot, but the bullet didn’t kill him – an infection did, months later, almost certainly caused by the stream of doctors who stuck their unwashed fingers and tools in him to try to find the bullet.