I’m speaking this morning at the Military Health System conference in Washington. It’s a high-speed panel, with 12 minutes per speaker, so I’m posting here the links to the sites and resources I’ll talk about. (This saves people from scribbling URLs or the frustration of not remembering later … just like getting information [...]]]>

I’m speaking this morning at the Military Health System conference in Washington. It’s a high-speed panel, with 12 minutes per speaker, so I’m posting here the links to the sites and resources I’ll talk about. (This saves people from scribbling URLs or the frustration of not remembering later … just like getting information in the doctor’s office, eh? Sometimes the Web is useful!)

At bottom is “Let Patients Help” – my 16 minute TEDx talk from Maastricht, in the Netherlands, covering e-patient founder “Doc Tom” Ferguson on self-care, three e-patient stories, and “the e-Patient Rap.” But first, here are the links:

Additional resources I may mention during Q&A:

• Finally, here’s my TEDx talk, making the case for empowering patients with information and encouraging their engagement. As I said on stage today, note that volunteers have added subtitles in 25 languages. I encourage providers everywhere to work at kindling this apparently universal drive. Let patients help heal healthcare – they are the ultimate stakeholder.

This page contains links to content discussed in the e-Patient Boot Camp today.

Here’s an example of why [...]]]> I’ll add this to my list of patient communities. This is an important project – we need to build, somewhere, a publicly available community list that patients everywhere around the world can access. Some sites on my community page are starting, but we have a long way to go.

Here’s an example of why – a true story from tonight’s email.

Tonight a friend emailed me, grumbling about the utterly useless responses a relative had received, trying to find out the latest thinking about the beneficial effects of bicycling for Parkinson’s patients. He’d even contacted one of the biggest-name hospital/clinics in the world, intentionally doing the e-patient “best practice” of seeking the best authority, and had only gotten links to useless news clips:

This is really interesting (snarl). My brother has what I would call early PD. A bad and recalcitrant tremor is his main problem.  He is a lifelong athlete – marathons and triathlons. He is HIGHLY self educated in the research on PD. His question is:  is the ‘forced’ aspect of the bike pedaling a critical factor in achieving the result? The reason is that 90 rpm is not ‘forced’ for him – it’s easy. But faster than 90 rpm and he bounces off the seat.

He has not been able to get an answer even from researchers. There may not be one yet, but here is Cleveland Clinic’s disappointing response – send him 2 news videos with utterly superficial treatment of the subject!!

Blew my mind. We have a long way to go, Dave.

———- Forwarded message ———-
From:
Date:
Subject: Biking PD study
To:

I asked the Cleveland Clinic if the pedaling had to be “forced” to have benefits. I got a canned response to look at these two videos. I did not find the answer after viewing them–did I miss something? Looks like immediate results that remain for days/weeks. Wadda ya think?

http://www.msnbc.msn.com/id/3032619/vp/26510952#26510952
ABC Good Morning America story with Dr. Jay Alberts

I don’t know superb resources for most diseases, but for this one, I know Peter Schmidt, CIO and Program Director at the National Parkinson Foundation. He wrote: (posted with permission)

—————

Yes, lots of thoughts.  First off, the “forced exercise” model is one that has been explored with fairly severe PD patients, and was hit upon opportunistically — Jay Albert was riding tandem with a person with fairly severe PD.  What most neurologists who study this believe is that the requirement is intense exercise, and that perhaps the
“forced” exercise studies are a result of studying people (or animals) whose disability is severe enough that they can’t exercise with sufficient intensity.

There is some controversy between the mainstream exercise in PD people who think it is intense aerobic exercise that delivers the best outcomes and a smaller group, a leader of whom is Giselle Petzinger of USC, who believes that it is learning a new skill (that is intense) that is important.  The interesting thing about Giselle’s work is that it offers an explanation of the forced exercise: by forcing the subject, there is learning of a new skill going on.

I’m not a neurologist, but I am pretty involved in PD research and have spoken to a lot of the top people on this subject (part of my job is visiting PD labs and clinics).  What I would do if it were me or my sibling is exercise a lot.  Combine “fitness” exercise–that is, aerobic exercise performed at a level to drive improvement, not just
running/biking/etc at a comfortable pace–and learn something new. Jump rope, start skating, learn to box, something new.  Don’t forget to spend some time doing strength and flexibility, which help in other ways, but the aerobic exercise has probably a 2/3 chance of actually slowing the disease.  Nothing else seems as promising.

Eric Ahlskog of Mayo, who literally “wrote the book” on PD (look him up on Amazon, there’s a patient and physician guide to PD that he wrote that is concise and excellent), is telling neurologists to medicate patients to help them to tolerate intense exercise.  Consult your doctor, but as a younger patient he might be offered a dopamine agonist to start.  Carefully consider the side effect of impulsivity that is not uncommon with agonists.  Make sure his family is vigilant for signs of impulse control problems.

[Re finding a top neurologist:] call 1-800-4PD-INFO.  The agents on that line are really great (they work for me) and can help with research questions, too.
_____

One more thing I forgot — my team made this: http://toolkit.parkinson.org which is a site that can serve as a guide for non-specialist physicians (or other smart people who know the lingo) who want to know the basics of Parkinson’s disease.

As far as patient communities, our site: http://forum.parkinson.org/ offers some good groups.  There’s also neurotalk and PatientsLikeMe.com has a PD group.

The World Parkinson’s Congress is in 2013 in Toronto and he should plan to go — it’s a great meeting of engaged patients and professionals meeting together.

Two months ago I posted Let Patients Help, Cost-Cutting Edition, part 1: a bill:

I often hear about how patients are a major part of [...]]]> Corrections added Jan 10 as noted. See sections marked “Update 1/10″. See also my comment tonight on today’s disgusting experience of trying to sort this out, and our ultimate rescue.

Two months ago I posted Let Patients Help, Cost-Cutting Edition, part 1: a bill:

In that case I tried to fathom a so-called “Explanation” of Benefits, which was in fact unfathomable. (The FTC forced cigarette makers to be truthful in labeling; can’t they force insurers to stop using “explanation” on something nobody understands?)

This time my wife and I are shopping for vaccines. Specifically, shingles. And trying to be a responsible consumer turned out not to be easy.

Shingles (herpes zoster, aka chicken pox) is a nasty condition that develops sometimes in elders who had chicken pox as a kid. (Wikipedia: “The immune system eventually eliminates the virus from most locations, but it remains dormant… in the ganglia adjacent to the spinal cord … or the ganglion semilunare … in the base of the skull.”) When it awakes, it is nasty painful – my mom had it for months this summer – and there’s not much of anything you can do. You just suffer, until it’s damn good and ready to go away.

And I mean suffer. It’s debilitating. Mom’s cropped up as she was recovering successfully from otherwise-uneventful hip replacement surgery(!) … apparently it’s not uncommon for this to happen when one’s system is challenged, e.g. by surgery.

There’s a vaccine, and it’s recommended for everyone over 60. So my wife and I decided to get it. (Nothing like a close family member with a recent horror story to get you in gear.)

But guess what: the vaccine is wicked expensive – at least $200 – and Medicare doesn’t cover it! Update 1/10: Medicare “Part D” (the D-for-Drug/prescription supplement) does cover it, but a lot of people don’t know that – including people who work for Medicare! See my comment tonight. Nor does AARP’s supplemental insurance. That’s Medicare “Plan N.” On the other hand, my private insurance – the New Hampshire high risk pool – does cover all immunizations … but there’s bureaucracy. Here’s what we found – a collection of anecdotes:

• My mom said a local grocery store’s clinic offered a deep discount if you fill out a long questionnaire. Not available here.
• My uncle in Atlanta got a verbal approval from his insurance before he & wife got it – then the claim was denied anyway, saying “Well, what that agent told you was wrong.”
• I called my plan, NHHP, and got a verbal okay. I called again, got a different agent, got a verbal okay. Called two weeks later, got another one. Went to Walgreen’s yesterday,which advertises it, and they said “Your insurance doesn’t cover it.”
• Called the insurance company today (they’re not open weekends), and learned they cover it but only at the provider’s office, not at a pharmacy (What??)  I’ve found a really good guy at the insurance company to discuss things with, and I told him I again want to do some comparison shopping.
  • I said “You still won’t cover it at the pharmacy, even if it’s more expensive at the doctor?” They said yes but only if I pay for it and submit the paperwork. How long will it take to get reimbursed? They don’t know – “It might not be very fast.”
  • In an earlier episode I’d learned they don’t keep info on which providers offer the best price for various things. I suggested they offer it – chances are pretty good they do have some historical data, and should publish it!
• I called Walgreen’s and asked the price: $220.
• Called my hospital (Beth Israel Deaconess) to inquire about their price.
  • Main switchboard didn’t know what a shingles vaccine is or where to get prices; referred me to my provider’s office. (No problem.)
  • They referred me to the travel clinic.
  • Travel clinic said they don’t do it anymore – it’s now in Infectious Diseases.
  • Infectious Disease clinic charges $298. Or, $209 if you pay in full at time of service. And btw, they only offer shingles vaccine on Tuesdays. (What??)
• I’ve been excited that Dartmouth-Hitchcock, a great quality organization, is opening a new facility near me next week. So I called them, and their price is … hold your breath… $360 plus $44 “to stick the needle in your arm.”  Yes, $404. (She said they make Medicare patients sign a special waiver saying they realize it won’t be covered.)

1/10 update:

• When we got the bill from Beth Israel Deaconess today, we saw that the $298 is $235 for the vaccine and $65 to stick the needle in your arm.

• Meanwhile today on a concall I heard (just grapevine) that Dossia.org is offering client companies information about, for instance, the prices for all the local MRI shops. That is a wild idea – offer us comparison shopping data. Woot.

All in all, my wife is assessing whether it’s worth the cash. Like everyone in this economy, we have plenty of concerns about cash.

Update 1/10: I convinced her she’s worth it – and then today we found out that Part D does cover it. (How many people skip the vaccine because they were told it’s not covered??)

Whether it’s worth the cash was Mom’s concern, too, as she postponed it for years, until it was too late.

Update 1/10:

• But now, it appears she could have had it four years ago: Part D plans covered it starting in 2007 (see this post on the AAFP site).
• Now this is pissing me off: this screw-up cost my mom months of agony, lost sleep, pain, exhaustion, a ton of family work caring for her, and pain, and suffering. All because this industry is such a disgusting, disorganized, misinformed mess that needed information doesn’t reach the people for whom it was created. For years!

Here’s what I want: Let Patients Help, and that includes controlling costs. Don’t you dare say we don’t care about healthcare costs, if you make it hard for us to shop. Please – help us help! Give us the information!

And please, insurance, when we find something cheaper, accept it…??? Let’s put an end to this malarkey of “Gosh, costs went up – we had to raise our premiums.”

p.s. Flu vaccines:

• Walgreens: $32
• Beth Israel Deaconess: free, in your provider’s office
• Dartmouth-Hitchcock: $46-$56, plus $44 to stick the needle in your arm

So tonight, for the first [...]]]> In the past couple of years I’ve gotten used to being on stage, but this July I’ll be doing it in a different way: for the first time in three years, I’ll be on stage singing, with my buddies in a choral competition: the World Choir Games, in Cincinnati.

So tonight, for the first time in three years, I stood on the risers and sang.

Longtime readers know singing used to be a big part of my life. I sang in school and college, and ten years ago I joined the Nashua Granite Statesmen, a men’s barbershop chorus. (Lots of people have heard of barbershop quartets, but not many know we do it in choruses too!)

For years they (we!) were the perennial New England champion and would go to international competitions. I’m no soloist but because of this great group I got to compete at internationals in Montreal, Indianapolis and Nashville.

At my diagnosis, five years ago this month, I asked Dr. Sands if I should stop singing to conserve energy, and he told me no – it’s not good to drop life activities that you love. (It seems I’d, um, talked about it a bit…)

The World Choir Games are a huge music festival with 100,000 people spread over a two week event. (Last year’s was in China!) It has all styles of music; my heart’s in the distinctive harmony of the barbershop style, and that will be our category.

Importantly, there’s more to barbershop than the music: it’s a community with strong ties. During my illness these men were an incredible source of emotional support – some came to my house to give my wife some time off (we called them “Davey-sitters”), and more than once I visited rehearsals, looking like hell, when nobody knew if I’d make it – and they sang to me: ”You’ll Never Walk Alone.” It was powerful.

I hope to post more as the months of preparation go by, but for now, teach yourself about barbershop harmony – and its role in my cancer year – by reading this post about why when I published my cancer book, “Sing” was in the title: Laugh, Sing, and Eat Like a Pig. The post has some video clips of great barbershop singing – and the story of the men who supported me in the worst of times.

In that post last April I said

These days my crazed speaking schedule makes it impractical for me to attend rehearsals, much less put in the hours it takes to learn the repertoire. (Barbershop is flying naked: a capella with no sheet music allowed on stage.) This video reminds me of one reason I want to adjust my business, so I spend more time at home: I want to be back on stage with my guys, making chords ring again, in the barbershop style. It takes work, but boy does it pay off.

It’s happening.
____________

Do you sing? On the Barbershop Harmony Society’s site Barbershop.org you can find a chorus and much more. And if you’re a singer in New England, we’re looking for more men for the World Choir Games – we want a chorus of 100! Call 603-886-SING for details.

(Women’s barbershop organizations are Sweet Adelines and Harmony Inc.)

Comcast customers – there’s now a Barbershop On Demand channel.

Precisely at 9:00 a.m., five years ago today, the phone rang and my life changed.

There were two calls, actually, from two physicians. I don’t recall which was first, but one was Dr. Danny Sands [...]]]> This is a re-post with new URL – for some reason the original of this post failed.

Precisely at 9:00 a.m., five years ago today, the phone rang and my life changed.

There were two calls, actually, from two physicians. I don’t recall which was first, but one was Dr. Danny Sands (my primary), and the other was orthopedist Dr. Jeffrey Zilberfarb.  Five days earlier I’d seen Dr. Sands for a physical; in my pre-visit agenda email (PDF at right), I’d noted “Shoulder: range of motion complaint,” and that as we’d discussed earlier, I had made an appointment to see Dr. Z on January 2. That visit had been cordial, unremarkable; he’d x-rayed my shoulder.

But in the x-ray Dr. Zilberfarb saw something unexpected, and he’d contacted Dr. Sands. Dr. Sands called me and said, “… I pulled up the x-ray on my screen. Your shoulder will be fine – it’s just a rotator cuff problem. But Dave – there’s something in your lung.” (See lower image.)

He said we didn’t know what it was – could be a fungal thing, could be a scar left over from some old infection – but “we need to find out.” I said, “So, you need me to get back in there?” He said yes.

Imagine hearing “There’s something in your lung” when you don’t feel sick – something significant enough that your doctor calls you at 9 a.m. You immediately start thinking about that spot, looking for any sensation, any sign of trouble. You start wondering, “Do I have a time bomb inside me??” And that’s not a nice feeling to have, when your doctor’s on the phone.

He said he’d called radiology and ordered a CT. In parting I asked, “In the meantime, is there anything I can do?” And Dr. Sands replied: “…Just go home and have a glass of wine with your wife.”

And that is a sobering thing to hear from your physician.
______

A couple of things about my interaction with Dr. Sands.

• The personal relationship between physician and patient is pivotal – knowing each other as individuals. He’s since said he wouldn’t give every patient news like this by phone, but he knew me well enough to handle it appropriately.
• Note also the subtlety of his advice to have a glass of wine with my wife. He’d never said anything like that to me, so it conveyed, artfully, that this was different. It prepared me for what we’d soon find out, causing what I’d now call appropriate concern without unnecessary alarm.

Please note the importance of the relationship in this crisis. This is impossible if all a patient ever sees is docs in the emergency department.
______

p.s. Our relationship has always included humor. By July 23 of that year my treatment had completed, and the next CT confirmed that my lesions continued to shrink. So I posted this to Dr. Sands on the PatientSite portal:

—–Original Message—–
Message Date: 8/27/2007 9:46:30 PM
Subject: Now, about this shoulder….

I’d like to write to Dr. Zilberfarb and see if we can pick up where we left off <8 months ago. (What a wild ride THAT was – jeepers.)

Indeed: what a five years this has been. Here’s to great medicine, here’s to great doctors and nurses, and here’s to participatory medicine.

Well, it’s January, Janus time – the Roman god of beginnings and transitions. He looks back, he looks ahead… he’s amazing!

Soon I’ll post about 2011 and 2012. But first: while putzing with my website today I revisited some way back content, which sets the stage even better for looking ahead. [...]]]>

Image: Wikipedia

Well, it’s January, Janus time – the Roman god of beginnings and transitions. He looks back, he looks ahead… he’s amazing!

Soon I’ll post about 2011 and 2012. But first: while putzing with my website today I revisited some way back content, which sets the stage even better for looking ahead. So, a quickie to start the year:

Video oldies – three short talks from the start of my public speaking about healthcare.

• I just found video of the first talk I ever gave (18:03) at a healthcare business conference – e-Patient Connections, Oct. 2009. It’s amazing to go back there and see what we were looking ahead to, back then.
  • The Society for Participatory Medicine had just been formed, and its journal had just launched its introductory essays.
  • Two years later, two dozen e-patients were brought together at the event to create an e-Patient Bill of Rights.
• Six weeks later, December 2009, was this Quantified Self talk (14:43) at Wired headquarters in San Francisco.
  • I loved relating with the tech geeks at QS; it was the first time I dared show the spreadsheet where I’d tracked my tumor sizes.
  • btw, socializing after this event I asked Matthew Holt of Health 2.0 for a bit of start-up advice. He never gave me a penny, of course :-), but his advice worked out.
• Three months later, March 2010, was this impromptu 10 minute interview with the then-enigmatic Dr. Anonymous. (He’s since uncloaked himself: Dr. Mike Sevilla at Family Medicine Rocks.)

e-Patient Dave lecturing at FutureMed, at Ray Kurzweil's Singularity University, NASA Ames Research Center, Mountain View, May 2011

At last: [...]]]> Registration is now open on EventBrite!

New York City – Friday, January 27.
Hosted by Edelman – the leading independent global PR firm

e-Patient Dave lecturing at FutureMed, at Ray Kurzweil's Singularity University, NASA Ames Research Center, Mountain View, May 2011

Patient engagement is reshaping healthcare. Learn how. Learn why. Learn what to do.

At last: the e-Patient Boot Camp comes home to America!

With boot camp poster in lobby of UMC St. Radboud

Last April, Holland was the site of my TEDx talk, which quickly rose to the top half of the most-viewed TED talks of all time. Volunteers have added subtitles in 25 languages – a clear indication of the universal appeal of its message: Let Patients Help heal healthcare.

Then in September the same sponsor – REshape Innovation Center at St. Radboud University Medical Center – hosted the global premiere of my first full day product: the e-Patient Boot Camp. Sixty patients, clinicians, academics and government people attended this in-depth, day-long edition of my keynote speeches, which have been earning an average rating of 4.8+ this fall. (See recent testimonials.)

Now, through the visionary leadership of Edelman’s Digital Health practice, the boot camp comes home to America. On Friday, January 27, at Edelman’s office in lower Manhattan, the first American e-Patient Boot Camp will take place, from 10 a.m. to 4 p.m.

Details of content, and Special Appearances, are still being nailed down, but we wanted to send out a pre-holiday Save The Date. For preliminary details see the boot camp page.

And if you haven’t seen it yet, here’s the TEDx talk that went viral around the world. Let Patients Help!

Note: I will not rap in the boot camp. That’s for much pricier events.:–)