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!

It's my Drop Dead Date plus three years. Thppppt!

Three years ago today was "razzberry day," aka Drop Dead Date. So, today on my CaringBridge journal I posted this picture.

Huh?? Patience, my lovelies; all shall be revealed:

At diagnosis on January 11, 2007 my median survival was 5.5 months, which predicted an "expiration date" of June 26. On that date all my buddies gathered at noon eastern time and blew razzberries (Bronx cheers) at Death as we zoomed past it and into the future.

Here's an email Mom sent yesterday to my siblings:

"Hi, all - Saturday, June 26 is the 3rd anniversary of Dave's beating his "Drop Dead Date" of the average 5.5 months survival time after diagnosis of his particular brand of cancer. I personally plan to give the razzberry salute at noon, again, to commemorate the day, and invite you to join me...

"He's at a conference in SC, home Sunday night; his book Laugh, Sing, and Eat Like a Pig is coming to Amazon SOON. I've spent the past few days doing a bit of proofing for him, and reliving the story; some tears, some giggles, lots of strong reminders of how and where we all were 3 years ago, dealing with HIS cancer, each in our own way. And the book also has much of where he's been since then... I'll (personally) make sure you each get a copy when it's published. My treat, though Dave may have had that thought already. If so, I win because I'm the mother and I said so..."

Dat's my mom - and you're my razzbuddies. Life is crazy good!

A vision of *people-centered* health

Heads-up, people - this is somethin' good.

I was invited to speak today at a meeting on "Patient-Centered Health" sponsored by the Ontario Hospital Association. I was followed to the stage by Vaughan Glover, author of Journey to Wellness, a 2005 book with a terrific vision of healthcare in which patients are truly responsible for the state of healthcare.

I hope to write more about it later, but for now just savor this quote from the back cover:

"We, the patients, must lead the way in building the next generation of health care in our country. The change will be driven by an informed and empowered public, demanding access to what is possible rather than what a government or any other support group is willing or able to provide."

How could I not have met this guy before?? Glad I did.

When BP spills coffee

From the Upright Citizens Brigade comedy site, UCBComedy.com:



(Thanks to Paul Levy for tweeting this.)

Seven minutes of an engaged patient's story

One of my clients is Klick Pharma, a Toronto marketing firm that creates superb websites to help patients be engaged in their care. They're real professionals in all the domains of their work: human interaction (how people use a website), messaging (the way concepts are delivered in words), and every aspect of production.

This spring they invited me to their video studio to record an informal chat version of my story, highlighting the ways patients use the internet to alter how they deal with disease. We spent several hours, and they did a terrific job of editing it down into something coherent.



(Email subscribes - if you can't see the video, click the headline to view the post online.)

The same video is on Klick's site here. Also on that site is a video of a talk I gave with Klick's Brian O'Donnell at a conference in Philadelphia. Most people in pharma marketing talk about the medication itself (in one way or another); Klick's approach is to support the patient in much broader ways - "Beyond the Pill," which is the title of the talk.

My segment starts at about 9 minutes. Thanks to Klick for their patient-centered approach, their competence, and for being a client of mine (in that order).