MITSS seeks HOPE Award Nominations

Do you know someone, patient or professional, who's been involved with medical error and has responded to it in a powerful, productive way? Please nominate them for this award.

MITSS is a tiny, wonderful, much-needed organization that does good work in an important area we hardly ever hear about: they provide services for people traumatized by medical error. And that includes both the patient/family part of it, and the clinicians who made the mistake. I first wrote about them last fall on e-patients.net, then attended their annual fundraising dinner. At this year's dinner, November 4, I have the honor of delivering the opening remarks.

Nominees are open, through 9/15, for their annual HOPE award. I lifted this from Paul Levy's blog:

MITSS HOPE Award Nomination Deadline -- September 15, 2010

The deadline for sending in your nomination for the 2010 MITSS HOPE Award is fast approaching. Take the time to nominate an individual, organization, department, or group that is doing great work aligned with the MITSS mission of Supporting Healing and Restoring Hope to patients, families, and clinicians impacted by adverse medical events.

Along with the national and international recognition that this prestigious award affords, the winner will receive a $5,000 cash prize that has been provided by the award sponsor, rL Solutions.

Go here for award criteria, an online nomination form, award history, past winners, and more! Nominating someone is easy, and submissions are done entirely online. Remember, too, that self-nominations are acceptable. Contact Winnie Tobin at (617) 232-0090 if you have any questions.

ABOUT MITSS: Medically Induced Trauma Support Services (MITSS), Inc. is a non-profit 501(c)(3) organization headquartered in Chestnut Hill, MA, whose mission is "To Support Healing and Restore Hope" to patients, families, and clinicians whose lives have impacted by medical errors and adverse medical events.

My review of Elizabeth Cohen's book "The Empowered Patient"

This month CNN Senior Medical Correspondent Elizabeth Cohen released her first book, The Empowered Patient: How to Get the Right Diagnosis, Buy the Cheapest Drugs, Beat Your Insurance Company, and Get the Best Medical Care Every Time. I got an advance review copy, and it's taken me this long to figure out how to express my thoughts. I just posted this review on Amazon.
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I've always been an empowered patient, so I didn't need to be sold on the concept. I'm a cancer-beating patient blogger, I'm co-chair of a medical society about doctor-patient partnerships, and I wrote my own book. So my question was, what does this book bring that's new?

What it brings is convincing stories, clear explanations, and concrete how-to's. It's short, comprehensive, and convincing. I don't see how you can NOT read it if you're responsible for someone's care, including your own. It awakens you to possibilities and risks, leaving you aware and enabled.

(Disclosure: Cohen wrote a quote for the jacket of my book, which is selling a million times slower than hers. But her view is different from mine. I've worked for weeks figuring out how to express the differences here.)

I'll start with the author's challenge, then how she handles it, then my objections.

The first big challenge for an author in this space is that *people tend not to care* about quality until trouble hits. And when it does, there's an instinct to not rock the boat: people want to stay put, to believe they're getting the best care possible. It's not rational, but I've seen it repeatedly: people are loathe to step out of the boat they're in, especially in troubled waters.

It's hard to hear that care might fall short, but it can. And there are many causes: human fraillties, lagging technology, information overload, even business ethics.

And here's the author's dilemma: the better you prove this with story after story, the more readers might feel powerless and turn away.

So how do you reach people?

This is where Cohen's mass media skills come in. She knows how to tell a story concisely, dip into the underlying reasons, and come back up with some concrete "Here's what to do's." There's an art to this: her own stories about her baby and her mother sometimes brought me to tears, but I wasn't turned away as I sometimes am. I was left feeling *this stuff matters*, and patients can help. By wising up, thinking for themselves, and speaking up.

Objections: if Amazon had a 100-point scale I'd give it a 95, not 100. First, a stylistic nit: it's obviously written by a TV person. Time after time she injects, "Coming up, I'll tell you how you can xyz"; I could almost hear "...right after this message." But people who think "She can't be serious, she's on TV" are wrong: every one of her anecdotes rings true, based on the many people I've met at conferences, and almost all her "What you can do's" are spot-on.

I agree with Mack90's comment that dot-gov sites are not quite as valuable or perfect as the book suggests: they can lag behind or be editorially skewed, no guarantee of "bestness." I've seen plenty of outdated information about my own disease (kidney cancer) on sites that match her recommendations, including sites with seals such as HON. But I don't feel as strongly about this as Mack90 does.

Finally, I object pretty strenuously to the title of the opening chapter: "How to be a `bad' patient." I'm clear that Cohen's intent (as she said yesterday in the New York Times) was to reach people where they are - speaking into the mindset of the mass market she talks to professionally, where many people feel it's not good (or even safe) to question one's doctor. I get the point, but I would have preferred to word it "It's *OK* to be a `bad' patient." In my view, "how to be bad" is a rough start for a book about empowerment.

But that brings me back to the top: this book brings mass-market communication skills to an area where many of us have worked hard to wake people up. Our books have contained much more information from different angles, but this could be the breakthrough that opens millions of minds.

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??