An interlude for laughter, the best medicine

I used laughter when facing my cancer, then put it in the title of my book.

This is from Uncle Sandy in Atlanta. Get ready.



(Email subscribers, if you can't see the video, click the headline to view it online.)

"Compliance: It's Not Just for Patients Anymore."

I'm in a patient safety workshop in Boston today, about engaging minorities in safer care. We just saw a video about safety awareness, encouraging patients to realize what a good role they can play in helping clinicians (doctors and nurses) get everything right. (Long story short, there are many many ways that things can and do go wrong - some complicated, some simple.)

When people talk about making healthcare more effective, "compliance" often comes up. It's usually about whether you and I take our pills, improve our diet, etc. Patient compliance is a hot topic on blogs: Google shows 93,000 blog posts, and 9,000 in the past year.

But the video made a thought come up: holy cow, a lot of healthcare quality issues are because clinicians forget to fulfill their part of the plan. Ironic! But fault-finding finger-pointing doesn't produce behavior change as well as inspiration does - calling forth what people know to be the best in themselves. Here's a draft of a message we might want to spread - feel free to share:

"Compliance: It's Not Just for Patients Anymore."

We all know about patient compliance: whether patients follow our instructions to accomplish good care. When compliance falls short, our profession is undermined. Care suffers, and our efforts are frustrated.

The same is true when we don't comply with our part. Whether it's hand washing or the Five Rights of administering medications, any shortfall cheats the profession as well as the patient. And perhaps our diligence - or lack of it - even rubs off on patients.

Compliance isn't just for patients anymore. Let's not cut corners. Let's set a great example for every patient, and stick to the plan.

^{This text authored by "e-Patient Dave" deBronkart. May be posted & shared freely with this attribution intact (Creative Commons Share-Alike 3.0)}

Additional resources:

• The safety awareness video is in this e-patients.net post.
• MITSS, the sponsor of this workshop, is here.
• The "five rights of medication administration" are:
  
  • The right patient (this is why they constantly ask your name and date of birth)
  • The right drug (medications too often get mixed up)
  • The right dose (Dennis Quaid's newborn twins famously almost died because two bottles of medication looked too similar though one was 1,000 times stronger)
  • The right time (4x/day, before meals, etc)
  • The right route (pill vs IV, etc)
  
  

Are you happy about why you're here? Are you free to be?

TED talk by Elizabeth Gilbert. Love this quote:

"Is it rational, is it logical, that anybody should be expected to be afraid of the work that they feel they were put on this earth to do?"



I'm posting it because the work I'm doing now is so fabulous, such a self-expression, that I get what she means. As it says on my business website, “This is the first time in my life I’ve felt I have a calling,” says Dave, “something I can’t get away from: it’s what I need to do. I’ve had plenty of fulfilling jobs in a great career, but not a calling. This is it.” And I think everyone should be on the lookout for what calls to them - like the muse she describes that flew into Tom Waits's head while he was driving, or the one that pulled the poet home to grab a pencil and pull that verse out of the air. Backwards, if necessary, as it tried to get away.

I know the feeling described in this talk, of a message coming through me, in a way that I just grab as it goes past. And when I speak, I just say what apparently is waiting to be said.

I'm going to watch this over and over. Thanks for the support you all give me, and special thanks to high school classmate Susan Alnes for steering me to this.

What's new in the new life of e-Patient Dave

A phone call today made me realize it's been ages since I've updated loyal readers with what's going on. It's been a busy and wonderful time. My business website is ePatientDave.com, with pages for various goings-on:

• The big news is that my book was released a month ago: Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it).
  • Here's the listing on Amazon, and reader reviews. (Conference producers, visit my contact page to ask about bulk purchases.)
  • Here's the listing on Amazon UK.
  • Here's the book's website. (At present it's a subset of my larger website; soon it will have its own.)
  • The advance praise has been inspiring.


• I've traveled a lot in recent months, speaking, attending policy meetings in DC, and meeting with people doing good work in healthcare. My schedule page is here.
• One of my favorites is that in October I'll be attending the fabulous TEDMED conference in San Diego, serving as an analyst for the Robert Wood Johnson Foundation. These are truly wonderful people with [big] fingers in many great healthcare projects, including Aligning Forces for Quality - a multiyear project that's already developing great data on how we can do healthcare better.

There's more; explore my website, or heck, just google "e-Patient Dave." :–) As I say, it's been busy and wonderful.

I'm particularly grateful to Klick Pharma, my client who produced the superb short version of my long story, which I posted here in June. They're exquisitely skilled, they really get it about patient engagement, and they're carrying the message forward skillfully.

Thanks to all of you who've been so supportive and encouraging - especially you who've provided paying work, to keep this "project" alive. Here's to better health for all!

Boston Globe notices my fabulous singer sister Suede! Cape Cod Jazz Festival, tonight

Long-time readers of this blog - and readers of my book(!) - know that a powerful force in my disease process was my Cape Cod jazz/blues singer, Suede. A totally self-supporting independent musician for years, today she finally burst onto the pages of "g," the Boston Globe's daily magazine of entertainment and diversion.

Writer June Wulff seems to have newly discovered my baby sister, but she totally gets it: "Watch out ... oy, we're in love with this talented lady." Couldn't have said it better myself!

One night only, at the Cape Cod Jazz Festival in Chatham, MA.

And it's FREE! (Usually a Suede ticket is $20-60.) FREE!

Kids are invited to say what THEY want from next-generation healthcare (free webcast)

I know this is last-minute but we/they don't have many registrations. If you know a kid, age 5 to anything, who's free Thursday afternoon July 8, join this free webcast. It's from 2:00-5:00 Eastern, and it's fine to attend for part of the event.

The webcast series: "Person Centered Health."

This is a great group of people, mostly in Canada, whom I met through my primary physician, Dr. Danny Sands. Why "person centered" instead of patient centered? Because they're way outside the box where most of us live; to them healthcare is not just part of good health, it's part of a good life. (I gave a brief glimpse of it last month, after speaking at a Toronto meeting.)

They run a monthly webinar that's unlike anything I've seen. It's a free live Webex event, which you can join by phone like a usual Webex. Or, if you're near a Cisco office (they own Webex), you can participate using their incredible "Telepresence" room, with life-size monitors. I participated in one of these, and it really is like being in a room with the people in other cities. It's nothing like Skype video.

In either case, you can register here. Now for the good stuff:

This session:

At the last session, even these out-there thinkers felt cramped, and wondered: What if we got some kids in here and asked them what they think? So at tomorrow's session, kids are invited to speak up. (I apologize for the late notice but I just realized yesterday that there's been little promotion and only two kids have registered so far.)

Organizer Wayne Mills writes this description:

As you know, Person Centered Health is a journey. In the past few months we’ve had some excellent speakers give us their perspective in how to enable PCH from a policy stand point, from an operation stand point, from a patient standpoint. One critical group we have yet to hear from is the people whom will have to ensure Person Centered Health is delivered in the future.

Therefore for our next session scheduled for July 8th at 2 PM Eastern time, we would like to invite young people. We would like to learn how do they see participating in their own healthcare system? Are they going to participate in the same format as we are (i.e. agree to have a wait time in their healthcare system) or are they going to create their own systems via social networking, etc? What changes would tomorrow’s leader's demand from today’s system?

Again, register here. It's even okay to register and join after the session starts. What's important is participation.

I used to hate Thunderbird. Is it better now?

This post is for people who've used the Mozilla Thunderbird email program, and are fairly demanding. Because I'm a demanding email user, and I'm considering Thunderbird.

But when I've tried it I've hated it, and I wonder if it's improved. A lot.

Background:

The other day I asked for help on improving my email situation. I got great advice, and I'll be moving to Google Apps, as several suggested. Tom Iglehart, co-chair of CCTWG, will help me with the move.

Here's the geek part: I currently use Outlook Express, but Tom points out that if I move to an app that supports IMAP, I'll be able to view all my emails (received and sent) from any device or any computer. (Why do I care? Among other things that will let my wife comb through email conversations about speaking engagements etc, which will take a big burden off my sole-proprietor plate. She's infinitely better than me at detail work.)

The best known app that supports IMAP is Outlook. I hate it. In my experience (three times over the years) it gets full and then it starts malfunctioning, and I'm not interested in putting in the effort to become expert at managing a dysfunctional program.

Several times I've tried using Mozilla Thunderbird instead. It was funky but okay, but there were infuriating limitations (really dumb missing features), which caused me every time to punt it and go back to Outlook, because my employer required it. Now that restriction's gone.

So I need to know, is Thunderbird a lot better than it used to be?

"Think About Your Life" patient-driven website

I love this: a website that could ONLY have been created by cancer patients.

http://www.thinkaboutyourlife.org/

"Find empowerment: Anything you can do to feel like you are taking control of your illness and treatment will help you. Thinkaboutyourlife was developed by cancer survivors. We have used the tools on this website in our own experiences, and we hope to inspire you do the same.

This website provides easy to use tools for each stage of the cancer journey to help you:

• Process your thoughts and feelings:
  Elizabeth shared the "Good day, bad day" tool with her family to tell them how they could help her throughout treatment.
  
  
• Take control and make decisions:
  Amanda used her "One Page Profile" with her doctor to discuss the impact of treatment on her life.
  
  
• Think about the "what now" and the "what next"
  The "Hopes & Fears" tool helped Susan to think about the next few months of her life after treatment.

I learned about the site from its creator, Amanda George, who commented on last month's post about person centered health. Hot diggety. Doncha just love how the internet is letting us connect with each other and share ideas??

I need a new email hosting company. Suggestions?

This one's for people who know about how to host websites etc. I need a change.

For www.ePatientDave.com I'm using an inexpensive hosting company, GoDaddy, that has great customer service. I'm not thrilled by their using Danica Patrick as their spokesperson in a cheesy way, but I can tolerate it. They've got really good customer service: competent people on the phone with little or no hold time. Their technical web interface is a mess in my view, but they're willing to do everything for you over the phone.

I've registered my domain name with them, and my website lives on their computers. Other users have mentioned that their sites have gone down occasionally but it's working fine for me.

What's not working fine is the other service I buy from them: email hosting. The way they do it, my genuine emails look like spam or phishing to some filters - and that keeps me from reaching clients. Like, when I try to email anyone at the Mayo Clinic it gets rejected.

Another client, potentially my biggest ever, thought I had no interest. They called before giving up, and we discovered all 5 of my responses had gone into their spam folder for the same reason.

Here's the corker: when I called in to ask Godaddy about it, the well-meaning guy on the phone was naive enough to say, "Well, your email is legitimate - can't you tell the Mayo Clinic to change their security settings?"

Right. Uh-huh. No, I think it's time to get rid of you, Godaddy, and find a provider who understands email security issues.

Suggestions, anyone?

I'm willing to consider Gmail, but I don't know if it's industrial strength. Ideally I'd like a provider that lets me store virtually unlimited emails on the Web, so my staff can access them - but it's vital that I have a copy on my computer too, so I can read them offline.

Coverage of ePatient conference at the National Library of Medicine

This spring I had the thrill and honor of being invited to speak at the National Library of Medicine in Bethesda, Maryland. Why? Because they actually had a conference about e-patients.

Yes, the U.S. National Library of Medicine, part of the National Institutes of Health, had an e-patient conference.

And they brought all the brass. Here's the inside front cover of the current issue of Medline Plus, their (free) magazine: (click to enlarge)

This was one of several times I found myself crossing paths recently with David Blumenthal. Funny, when he was a doctor at Mass. General I never saw him, but now I see him often.

The most fun was meeting Dr. Lindberg, quoted in the article. In every speech I cite something he said that's quoted in the e-Patient White Paper, about how impossible it is for doctors to keep up with the information explosion:

"If I read two journal articles every night, at the end of a year I'd be 400 years behind."

That's one of the most potent quotes to open people's minds to the power of activated, engaged, e-patients. Physicians are overloaded and have thousands of conditions to track; you and I only have our own conditions. They must go wide; we can go deep.

The really fun thing is this: sometimes a skeptic would question Dr. Lindberg's statistic, saying "That's not really true - it's probably different today." Well, now I can say "When I had dinner with Dr. Lindberg this spring, I asked him about that. He said it is different: it's much worse now."

Here's to e-patients - and here's to the amazing realization that these great academics are noticing!