Who is on the other end of a health search query?

While producing my thesis film at Boston University in the 90s, one of my wonderfully creative advisers, Srdjan Karanovic cautioned me to be mindful about the themes I worked with because they would likely manifest as important subjects in my life.  My, how prophetic he was.

While I don't make films anymore, I curate and create online health content. Sometimes it's like making a movie, but more often it's like making a scene within a movie. The work is creative and growing ever more so with each advance in technology.  But what really keeps me interested in the field is that I am always conjuring that audience on the other end of the search query . . .

Is she alone? Or poor? Is he afraid,  angry about what he's about to lose? Is the searcher seeking data - just the stats? Or wisdom? Or is it forgiveness he's after?

These distinct "genres" of health queries ideally receive a response that is a rich, service driven offering that meets a searcher where he is, so to speak, then moves him gradually to a place of new understanding and action. We expect a lot, don't we? We regularly promote, "Take control" and "Make it happen" on the pages of the most popular health websites today.

But asking a lot of patients doesn't help them accomplish a lot. And that's why now is the time for companies to invest in building compassionate service-driven content. Now is the time to provide health seachers results that bear witness to the many dimensions of human experience; that educates and cares for people where they are. Now is a time for leadership.

"Mind, body, spirit - from birth to death - by life stage and with empathy," is a possible call to action for health editors today.

As an editor, one cannot help but feel both excitement and responsibility when she's creating content that may influence another person's course of healing.  That's why we hope that most editors are compassionate. That they balance science and art in their approach. We also hope that they are experienced and not just cranking content farm pages out based on keyword metrics.

Remember: We are creating content and engines that will fuel pages and pages of search results for years to come.  Millions of people will depend on those results.

Professor Karanovic's words come to life when someone I know and love becomes the person behind the search query. That's when my humble impact on the world is revealed for what it is: a drop in the bucket. Yet, in these moments, when I sit with a sick friend and I sense her excruciating search for answers to questions such as: Why is this happening? How can I get back to ___ or ___? Will I be able to afford this medicine? Can anyone help me? Am I going to die? . . . I am living the themes of my work.

In these moments I am overcome with a desire to reassure and to serve in whatever way is appropriate and practical. But it is not my desire to reassure a friend that she will survive or live the way she used to live. No, it is more my wish to reassure her that she is not alone, that the suffering she feels is real, and overwhelming, and frightening. And that, in spite of all these things, she still stands a chance of making it through. Yes, it is powerful training to sit and share with sick people.

But the bulk of the job gets done when I return to my desk to humbly curate and edit packets of health information. I cannot help but be mindful of the human being on the other end of the search query.

...

3 elevated ideas from 2009

'Tis the season to reflect and "force abandon" the bloat, the bogus, and the banal of the year behind. As we edit and prune in preparation for the year ahead, I'll offer up 6 ideas, nah just 3, ideas that changed my life in 2009:

#1 - It is easier to be a prophet than a saint.

M. Scott Peck said it best, but it is my family and close friends who remind me every day that living well and generously is less about being clever than it is about being consistent and actively creating a life of purpose and meaning. This quote reminds me to stay grounded in the face of change.

#2 - "[We just don't] fathom ... that most big dreams originate in someone's living room with a small group of people, regardless of where they come from or how they are dressed." (p. 50, The Blue Sweater)

Innovation and progress are fertile, close-to-the-ground energies with social dimensions. This quote reminds me to get intimate, to share out in order to dream big. If you are interested in catching an in-depth glimpse into these social dynamics at work, read The Blue Sweater.  In it,  Jaqueline Novogratz, treats us to an inspiring account of her search for an end to global poverty. The book is a rare first person account of the sacrifices and celebrations a social entrepeneur makes on her way to manifesting her own authentic leadership style.

#3 - "... We love to talk on things we don't know about." (Ten Thousand Words, by The Avett Brothers) Listen to this track.

I joined The Conversation in a big way this year because Twitter gave me a mic.  Mostly, the conversations have been educational and entertaining. As I participate, however, I worry about how the acceleration of information will impact us long term. The fast pace seems likely to destabilize institutions and economic pipelines in ways we won't understand until significant compression has occurred. That said, these are exciting times and there is no turning back.

Best wishes for 2010 and thanks for reading in 2009!

Gardeners call it pruning: Forced abandonment for 2010

In Living in More than One World, Bruce Rosenstein captures the essence of Peter Drucker's lifelong quest to teach managers that "living in more than one world," means letting go often and with mindfulness.

Gardeners call the letting go process "pruning."  Parents call it "grounding." Peter Drucker upped the ante and called it "forced abandonment."  

But there is a difference between me pruning a tree and me force abandoning my long held plan to accomplish X or Y in my lifetime. The latter takes a lot more chutzpah. 

The season between Thanksgiving and New Year's is a wonderful time for reflection and rebalancing. Perhaps instead of a New Year's resolution this year, we should think about our possible forced abandonments. Could be just the trick.

____________

“The educated person will…have to be prepared to live and work simultaneously in two cultures— that of the ‘intellectual’ who focuses on words and ideas, and that of the ‘manager’ who focuses on people and work.”

— Peter F. Drucker, Post-Capitalist Society

The Drucker Institute

 ...

Rosabeth Moss Kanter's 15-minute competitive advantage

Just like your children need to be able to understand and incorporate changes in roles and expectations at home, so do your clients need to understand and incorporate the innovations you present to them before they will support you. This is especially important for innovations within the health care system.

For inspiration, here is Rosabeth Moss Kanter's short list of innovations most likely to succeed at gaining the support of your customers. They are fiendishly simple:

Trial-able: The idea or product can be demonstrated on a pilot basis. Customers can see it in action first and incorporate it on a small scale before committing to replace everything.

Divisible: It can be adopted in segments or phases. Users can ease into it, a step at a time. They can even use it in parallel with current solutions.

Reversible: If it doesn't work, it's possible to return to pre-innovation status. Eventually you want life to be unimaginable without it, but at least in theory, it's possible to go back to zero.

Tangible: It offers concrete results that can be seen to make a difference in something that users need and value.

Fits prior investments: The idea builds on "sunk costs" or actions already taken, so it looks like not much change is involved.

Familiar: It feels like things that people already understand, so it is not jarring to use. It is consistent with other experiences, especially successful ones.

Congruent with future direction: It is in line with where things are heading anyway. It doesn't require people to rethink their priorities or pathways, even though of course it changes things.

Positive publicity value: It will make everyone look good.

I hope you'll read the entire article, "Find the 15-Minute Competitive Advantage." Ms. Kanter is one of the finest business writers out there.

BIO: Rosabeth Moss Kanter holds the Ernest L. Arbuckle Professorship at Harvard Business School, where she specializes in strategy, innovation, and leadership for change. Her strategic and practical insights have guided leaders of large and small organizations worldwide for over 25 years. The former Editor of Harvard Business Review (1989-1992), Professor Kanter has been named to The Times of London list of the “50 most powerful women in the world”.

Her latest book is SuperCorp: How Vanguard Companies Create Innovation, Profits, Growth, and Social Good. At Harvard, she is chair and director of the Advanced Leadership Initiative, a University-wide faculty group aimed at deploying a leadership force of experienced leaders who can address challenging national and global problems in their next stage of life.

Farms and fields and family

This morning we drove out to Sugarloaf Mountain, MD to see our friend David at his bountiful farm and market on Comus Road. What a lovely excursion except that the kids had a loud case of the "gimmes":

I want that 60 lb. pumpkin
I'm hungry, let's get cider
can we?
could we?
when? . . .

Why? I steamed silently. Why must we bring all of the city's materialism with us wherever we go? Don't they get that farms are sacred? Haven't I been pushing that hard enough?

And that's when I had to lighten up. Farms are not sacred to children. They are seen (at least by my children) as liberating spaces, with room for all to be him/herself. The sensory triggers kids encounter on the farm are expressed transparently; the fear, the joy, the boredom.

Gross: There's mud everywhere.

You guys think farms are so great. (eyes rolling)
Watch out for those bees!
I want that $60 pumpkin.
You have too many rules, mom.

We did our browsing, helped David unload a few fresh pumpkins from his tractor, then headed along the country roads to the next stop. That's when I heard my son say, "I want a farm someday." Comforting words, I thought. Then a twinkle rose up to my eye.

***

14 takeaways from Gel Health 2009

Gel Health, the 1-day conference on Patient Experience, was held in New York City this week. Since this was my first Gel Conference I wasn't sure what to expect. But by mid-morning break I too had joined the tribe of Gel devotees.

I wish I could share the complete experience with you, but it would be impossible to capture the attention of the audience, the sound of laughter (and tears) in the theater, the thrill we felt listening to the steady drumbeat of what's right in health care (in a time when all we hear is what is so wrong). So, while I took pages of notes, the 14 takeaways below are not quotes as much as they are my paraphrasing of speakers' thoughts that made an impact on me:

1. We need food, housing, [health care], jobs…yes. But we also need roses. Cathy Salit, CEO Performance of a Lifetime
2. The [health care] system is designed to deliver technology . . . it is designed for the doctor, surgeon, health care worker, but not the patient. Bridget Duffy Former Chief Experience Officer, Cleveland Clinic
3. It was risky . . . but I went forward. [I learned that] when you’ve played together, you work differently together. Sharon Krumm, Director of Nursing, Johns Hopkins Kimmel Cancer Center
4. Cooking is a disruptive technology in Health Care . . . [And a related thought:] Is it medical error to offer sodas and high sodium foods in a hospital setting? John LaPluma, ChefMD
5. We need courageous, “True North” style leaders in the C-Suite of every hospital out there. We also need Patient Advisory Councils. Dan Ford, Patient Advocate
6. 2/3 of medical errors are not disclosed. And yet, “To err is human, to forgive divine. “ [Patients and providers] must move toward forgiveness. Sigall Bell, MD, Beth Israel Deaconess Hospital
7. The focus is on living [not on dying]. Living is what will get you through. Mark Pochapin, Jay Monahan Center for Gastrointestinal Health
8. Dancing is one of the most pleasurable experiences... I wanted to do something different. I did not want to contribute to a person self-identifying with their disease. Olie Westheimer, Founder, Dance for PD, with Mark Morris
9. Good experience isn’t just about storytelling; it's about performance. Mark Hurst, Founder Gel Conferences
10. Patient experience must take into account a person’s environment . . . where they come from, their level of health literacy. You don’t know what you don’t know. Javette Orgain, MD, Family Physician, Chairperson, Illinois State Board of Health
11. Once when one of our clowns was juggling in the ICU, a doctor said, “Clowns don’t belong in the ICU.” To which I replied, “Neither do children.” Michael Christensen, Founder of The Big Apple Circus and Clown Care
12. This was not something I figured out in an Excel spreadsheet . . . We hire people because they are talented AND because they are willing to be vulnerable. Michael Christensen, Founder of The Big Apple Circus and Clown Care
13. The more I looked into the eyes of the homeless, the more I saw myself . . . People have layers and layers that need to be peeled back. [The way we practice conventional medicine] is not reality based; it suits a billing structure, or a hospital setting . . . but it doesn’t fit us. Jim Withers, MD, Founder Operation Safety Net
14. The patient has been saved . . . and now what do you do? . . . We were becoming therapists. Then our son said, “I want you as my Dad not as my therapist.” Ken Trush, Co-Founder of Daniel’s Music

I look forward to staying connected with new friends and to attending Gel Health again next year. Won't you join us? Sign up here for Gel Health 2010.

...

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No despair allowed: Climate change for kids

Today is Blog Action Day for Climate Change. I thought I'd post a few few ideas from a parent's perspective:

We parents are in a tough spot when it comes to telling our kids the story of climate change. Should we tell the whole truth? A partial truth? Should we be abstract or specific with our language? Finally, how outwardly obsessed and directive should we be over climate change at home?

There are many excellent approaches out there. We need them all. Yet, the approach I favor goes like this:

Keep my sense of humor engaged and invite an open, ongoing dialog with the kids. Since I am in the midst of making changes myself, the light touch helps me deal with inconsistencies. Above all, I try to keep an upbeat tone. I believe a "We can do it" tone will build the most eco-intelligence for the next generation. So, there is no despair allowed when you talk to your kids about climate change. Here are a few ideas to help you put it into practice:

• Weave climate change and shifting habitats into the discussion of many topics you visit: Places you love, oceans of the world, stars, food, farms, animals, the environment, money, style.
• Remind yourself that change starts at home, then show the kids "out loud" examples where you don't recycle correctly, where your choices were less than perfect. Often, they catch my "Duhs!" and give me a good ribbing. "Mom, you should do this, not that." I let them teach me.
• Look at cars in the neighborhood. Who is driving a big rig that eats up gasoline? Who has a cool compact car? "What kind of car would you like to drive?" I'll ask. Yeah, we get sidetracked looking at all the brands, but generally, kids get that a big car is no longer a sign of a person's affluence or success. In fact, it is often a sign of a person's unconsciousness.
• Look at food packaging. There is now an entire aisle in my supermarket devoted to snack size this and snack size that. It appears that portion control was the driving factor in that product design. So, portion control brought an abundance of packaging to deal with. Is that a step forward? Why not eat an apple instead of those "whistling cheeze dots?"
  
• Finally, tell a story that creates a backdrop for the fear and the anxiety you have for the planet. I love to tell stories about changing habitats. I bring the dilemma of scarcity into the hearts and minds of animals my kids love to conjure: the polar bears, exotic birds, penguins, etc. Stories tell us where we've been, where we are now, and where we'd like to go.

Have a go at it. Keep it real and let it evolve into a bigger conversation as the kids mature. We'll need their help designing lives that contribute to environmental health. Why not get them started early?

***

Related:

• Best bonding activity for families
• Coco's weekly meal plan: Kid tested
• ECO-canciousness, even at your house

Visible invisibility on Twitter

French filmmaker Jean Renoir is credited as saying something like, "If you want to portray a man suffering loneliness, shoot a scene of him in a crowd." . . .

Recalling this quote made me think about Twitter and how using it can make a person feel very lonely at times. See, one never can be or have "enough" on Twitter, right? It's endless. And endless things are ... well, lonely.

She has more followers.
He is more clever.
That one is attractive.
His job sounds like a dream.
Those guys RT each other constantly.
She's vague.
He never RTs anyone.
Yay! She noticed what I said.
Why are they asking me to RT?
I would like to Tweet this, but I shouldn't
Everyone is Here or There but me
This is all bull
And more like that . . .

Anyone who has spent time on Twitter can relate to feeling a bit emptied out at times.

Visible Invisible
Contributing to that emptiness is the growing number of "visible invisible" tweets that don't add a thing to the conversation. They aren't quite spam, but come very close. They don't make you laugh, but neither do these Tweets touch your heart. The Twitters that I feel play the "visible invisible" game actually evoke in me the image of a noisy toddler coming into my house. The toddler who pulls out all the toys and settles into playing with none of them. It's an energy drain having a "visible invisible" type around... sucking the wind out of the room.

Build a feed that makes room for change
Tastes, opinions, desires, and opportunities change. There is a lot of room for fresh ideas and honest inquiry in the world. Building a stream that shows your personality is good practice. You will spot your weaknesses, celebrate your strengths. Your feed will be alive.

So, take a look. Does your feed allow you room to evolve your ideas? Or does that visible invisibility you pass on as expertise ultimately hold you back? Think about it.

Put yourself, not some idea of who you are supposed to be, into your tweets. You may build your character as much as your follower list.

. . .

Other posts
And never stop dancing . . .
Cancer isn't fair
Friend me, follow me. Humble me.

Cosmos or chaos: Which way to health reform?

Note: The point of the post is to open up a view to the extraordinary power of the present moment; how we are inventing a new health paradigm. Ideas mustn't be limited to accepted standards such as "efficiency," etc. Although those standards are important, beauty is too.

Healing messages can be simple
We rely and organize the experience of illness - as well as the experience of health - around cultural archetypes. This process of cultural meaning typically transmits without our conscious awareness. Here is a nano-example:

If we suffer a cut to the skin that is deep and threatening, most of us will call 911 and/or drive immediately to the ER. We do not contemplate the symbols or assumptions embedded in the ER experience as we take action to stop the bleeding. In this case, the moment of healing is black and white: "Get to the ER, stop the bleeding ... or perish."

Healing messages can also be complex
Yet, in many other (perhaps most) cases, and especially in the area of health promotion and prevention, the complexity of healing messages really heats up. Grey matter abounds. Being healthy looks more like fluid movement toward certain forces rather than arresting the flow of other forces. Herein lies the sweet spot of health reform, the place where we have lots of potential to influence up (by generation) if we can figure out where to put the investment.

The sweet spot of health reform
Working our way into the sweet spot *is* rocket science as a colleague on Twitter wrote recently. (Please help me id this tweet.)

As it stands now, not only is an appointment for a well visit supposed to include tailored:

• temporal reinforcements (i.e., "I'll be in touch with the results;");
• an awareness of gender and religious preferences;
• succinct and passionate delivery of avoidance marketing messages ("Limit/avoid tobacco use"; "Avoid eating too much fat.");

we'd also like a moment of respite, a bit of energy transcending the doctor-patient relationship to makes us feel good. Not so easy for a health care worker or physician to convey all of this rich stuff in a 15 minute visit.

It's no wonder every one's first best guess is to believe technology can help. But perhaps we could get to the changes more organically by growing the country's social awareness of health as a finite resource. It is ours to lose.

A conceptual dialog
As the national conversation around trade-offs in health reform progresses, I wonder why a rare opportunity to reflect on "what makes us feel good/bad about our health" (long wait lines @ doctors' offices, no advance calls to drug stores, no guarantees for good health, difficulty with communicating on all levels, feeling alone, or powerless to deal with bad habits and expenses, and an overall sense that one needs to pay to play the health game) is being passed by. ...

Could it be that this omission is due to the difficulty of working with conceptual ideas on a national scale?

Or, alternatively, could it be that skirting conversations about negative work flow is a strategy to deal with information fallout - a feeling that we simply have too much data (and too many of those "black and white" needs) to synthesize, so, "Enough already!"

Then again, could it be plain old-fashioned profit and politics? Is it possible that politicians (and many Americans) disdain conceptual thinking because it exacerbates feelings of uncertainty while at the same time exposing alliances and preferences that most of us would rather leave alone.

Cosmos or chaos: Which way to true health reform?
Health reform is much more than performance art and politics. It is much more than retrofitting a highway design from the 50s and equipping it with EZ-Pass technology. Health reform is about the development of America's identity, as well as America's marketplaces. And that's why we need to have a strategy, a "cosmos" to help us move most efficiently.

That's right, we must create and engineer a "cosmos" for health care, not a chaos.

A cosmos for health care is a higher concept with a clear, energized vibration. It conveys the extraordinary responsibility we share in the creation of revised archetypes of care. It acknowledges what is wrong, where we need to learn. AND it illuminates the beauty of the ideas proposed, not just hammers away at the bean count level.

We are *gets tingles* literally inventing, and reinventing, powerful partnerships with the human genome, smart technology, data streams, and ever evolving human beings. If we do it well - we'll disrupt current health infrastructure for the foreseeable future. Of course we should expect chaos.

But we cannot stop at chaos. To stop at chaos is to miss this opportunity entirely. Like an artist who shows his angst without the beauty that grows out of it, we must be led to the cosmos of the next generation of care and opt in. That is the way to leverage the chaos of disruption.

A bias for beauty
We don't often think that health reform can be beautiful. In fact, we are heavily committed to a belief in anxiety and constrictive energy around choices, winning and losing. However, our process seems false. It seems to be one that hurries along, that forces quick steps to mimic progress on a path unnamed. The motions are jerky, motivated by a fear that the country's needs may (will soon) catch up and overwhelm the medical pacts we made long ago.

As the system asks us to follow a more orderly, simpler path along the journey what will be our response? Cosmos or chaos? An unrelenting, steep uphill with no respite, no shady overlooks, and, certainly, little inspiration?

Change is awkward
If we identify the changes so many of us yearn for, and create a way to talk about those changes on a conceptual level first, wouldn't we be better equipped to create cosmos (and requisite policies) that are truly transformational, affordable and life-affirming?
...
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Health reform: For amateurs too?

We played "Kid's Topics" in the car on our way home from a long trip a few days ago. One of the cards queried, "What makes you feel better when you are sick?"

My son, age 8, blurted, "Sipping Coke sometimes helps!" My daughter said, "Getting hugs from my mom." They both agreed that "Resting on the couch with the TV on," also felt good when they felt bad.

So simple. These remedies are the things we have taught them to feel good about doing when they are home from school with an infection of some kind. "Take a sip of this warm Coke." "Rest here on the couch and I'll put on Animal Planet." Etc., etc.

Right or wrong from an evidence-based perspective, as parents we build and transmit our nations health culture. Period.

In the conscious minds of most of laypeople, what most of us identify as healing is not what experts purport, but what we are taught to believe in, right or wrong. Sometimes there is overlap, but not always. The disparities are cultural issues - not just educational/economic gaps - and, unfortunately, seem to have little to do with health care and health care rationing as it is being discussed today in the Federal arena.

Amateurs need a say in the health care debate in order to make this work.

In a wonderful piece, "The Avenging Amateur," a Time Magazine editorial by Kurt Andersen, historian Daniel Boorstin is quoted as saying, "The greatest obstacle to discovery is not ignorance, but the illusion of knowledge."

How true the existence of the "Illusion of Knowledge" has turned out to be in recent health care reform debates, even those on supposed "Social" channels, such as Twitter.

Unfortunately, without reforms that acknowledge and revise cultural expectations and underpinnings, we will have a hard time realizing health reform in this county. We may reform an aspect of the system -- the work flow, the billing -- but we will miss a tremendous opportunity for real reform if we do not develop a way to work on the cultural level.

When I contemplate what Obama's health care reform program (i.e., the money he's put on the table) might mean, I get the chills. To an amateur, it is simply a mind-blowing opportunity to engineer not just new work flows, but new meanings too.

Endorse the right to access your health data!

No patient/caregiver/provider can do his or her job without access to data. That's why I support "A Declaration of Health Data Rights" from HealthDataRights.org.

ENDORSE NOW

In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

1. Have the right to our own health data
2. Have the right to know the source of each health data element
3. Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
4. Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

ENDORSE THE RIGHT TO ACCESS TO YOUR DATA NOW

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Father's Day and Multiple Sclerosis: A Two-step Dance with Dad

originally published in 2008

Wasn't it Anne Sexton who said "It doesn't matter who my father was; it matters who I remember he was." That quote invites me to reflect on the fact that memories of my father are divided into: Memories of Dad before MS (Multiple Sclerosis) and Memories of Dad after MS.

MS first visited my dad when he was 50. It was sneaky: A quiet but persistent tingling in the toes and intense fatigue that he just couldn't shake. (Learn about early symptoms.)

I was 17, preparing for college, the future. Dad was in a different place — his own pain — a pain he held privately for a long time.

Because an MS diagnosis may take a while to be confirmed, he spent many years fighting what ultimately became a confirmed MS diagnosis.

He was determined not to believe it for a while and just figured he'd "push on through." (Just the same way Dad would cope with cold and flu ...)

But MS had a better plan. Let's just say it took as long a time for the disease to unfold as it took for my dad to accept the diagnosis. Maybe that was a saving grace, since a faster progression might have been too much for him.

Before MS, my dad was active and outdoorsy. Very much a "man in his body" he liked to work hard and play hard. I remember my dad — built like a lumberjack and with the ruddy complexion of a sailor — up on the roof fixing cedar shingles, sailing our small boat with friends and family, building custom cabinetry for the house, and doing everything he could himself in order to save money for the future, for education.

Dad kept his family active too. I remember my father skiing downhill on frosty mountain mornings. I remember the long rides he scored while body-surfing in the Atlantic. I remember tennis lessons with him, and watching him genuflect at the edge of a church pew on Sunday mornings after a rowdy Saturday evening with his friends ...

But if I had to pick one pre MS memory of Dad to preserve it would be of him on the dance floor. My dad was so sure-footed and gifted on the dance floor that he literally made any woman glow-n-glide like a natural. The last dance I shared with my dad was on my wedding day, an impressive 12 years after his initial diagnosis.

While I will forever and always cherish the meaning behind that last dance with dad, I have grown to love and admire, just as much, the memories my post-MS dad — still just 65 years old and full of life — gives me.

For instance, I am so very proud that after years of teetering on the verge of a fall, rather than using one of the canes he bought "for the day he needed one" my dad has given his family the memory of a man who accepted his diagnosis and is learning to live well with it — even though the losses continue to be significant and they hurt a lot ... a real lot.
I am proud that after years of fighting his diagnosis my dad teaches me and my children to ask and receive help when they are sick or need assistance.

I am proud that after avoiding the learning he was being asked to do, my dad is now enrolling in drug studies and that he uses a scooter to stay engaged and independent in activities when his energy affords him the chance to do so.

I love and deeply admire the courage my father shows when he makes small adjustments to his life with MS. Instead of building and installing those heavy wooden cabinets, he now carves award-winning decoys of light-weight wood. Instead of being first at sports, he's first with patience for others ... and first to accept when someone he loves comes up short.

It may sound corny, but Dad, you have given me the memory of two men's lives. I will cherish them both always.

Happy Father's Day to a guy whose life gives a whole new interpretation of the famous old Two-step Dance. We love you so — perhaps twice as much — for being who you are.

Summer with Children: Remembering the Gift of Parenthood

Written by Margaret Leeson, mother of 3

We are entering that blessed season when, hopefully, our children's schedules thin and they are, thankfully, left with more time to contemplate and experiment with boundaries. As I ready myself for my first summer with a teenager in the house, I am especially aware of the bounty of opportunities that lie ahead: for her to pull one way and for me to gently remind that, yes, there are still boundaries even after 13. And with good reason.

The last several months have provided moments for me to get warmed-up in this arena.

As in much of life, sometimes in parenting lessons come to us from the backside. For one lesson I am particularly grateful, even as it caused disappointment at the moment of impact. Allow me to recount this simple story. Simple though it is in that it likely replays itself daily throughout our culture, the lessons taken home for me hold great significance.

Not too long ago, a group of my elementary school sons’ peers labeled me “over protective.” Their primary basis for such labels, they told my sons, is that I do not allow my boys to play the Xbox 360 Halo games. (With the exception of one Halo game which is rated for a Teen audience, the Halo games are rated for a Mature audience.)

Although I have followed the underpinnings which lead to this encounter, the exchange nevertheless surprised me. What surprised me the most about the accusation is the judgment that necessarily underlies the label “overprotective.” The Random House College Dictionary defines “over protect” this way: “to protect (esp. a child) to the point of inhibiting appropriate action or development.” And so the logical conclusion is that the activities to which the other children were referring are “appropriate.” The question raised for this parent, then, is: How do we define appropriate? What if everyone else is doing it? What if your intuition guides in a fundamentally different direction from the tides in which your children swim?

Recently, I had the great privilege of listening to a talk titled “But Everyone Else Is” by Michelle Kriebel. Michelle is a consultant with Jeff Wolfsberg & Associates, Inc., Drug Education and Wellness Specialists. She travels the country speaking with parents in the middle school years about the topic of peer pressure: How deeply it permeates our children’s lives and how to gain perspective on the intensity of emotions that it engenders.

Essentially, the basis for the intensity of peer pressure and the “But Everyone Else Is” perspective is two-fold:

1. The frontal lobe (in particular the prefrontal cortex) of the brain (that part of the brain responsible for careful and reasoned decision-making) does not develop until a child reaches his early to mid-20s. The part of the brain which governs childhood as well as early and late adolescence is the amygdila. The amygdila is all about impulse. The amygdila is concerned with the now, with the immediacy of our emotions. For better or for worse, the amygdila also invites us to take risks.
2. Vastly expanded technologies of communication, together with the manner in which content is disseminated over the Internet and into our homes have exponentially expanded our children’s notion of the “everyone.” These expanded technologies have also enabled widespread exposure to content which many believe is not developmentally appropriate for the audience which consumes it.

Given these two forces: the undeveloped frontal lobe and the vastly expanded notion of “everyone,” I took home one final valuable lesson from Michelle’s talk. This is the message that children expect us to serve as their frontal lobe, they need us to guide them and model for them and they are emotionally stronger and happier when they know that they have the steady hand of their parents at the tiller while they struggle to weather the storms of growing up.

Given the fact that the amygdila does not enable a child to see the consequences of his action, the message needs to be this: although we need to love our children unconditionally, we do not need to trust their judgments and desires unconditionally. Parents need to remember that, although children and teenagers may act and look like they do not need our guidance or judgment, their brains depend on the perspective and reason of adult minds. And, that is the gift to which the title refers.

The freedom of summer sometimes lays a heavy hand on the true meaning of what it is to be a parent. This year, thankfully, I am reminded that to be a parent is a gift and with that gift comes opportunities to grow and open our minds as we parent.

Bibliography for thoughtful summer reading:

Taking Back Childhood: Helping Your Kids Thrive in a Fast-Paced, Media-Saturated, Violence-Filled World, by Nancy Carlsson-Paige, Ed.D.

Hold On to Your Kids: Why Parents Need to Matter More Than Peers, by Gordon Neufeld, Ph.D. and Gabor Mate, M.D.

The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children, by Ross W. Greene, Ph.D.

Raising Resilient Children, by Robert Brooks, Ph. D. and Sam Goldstein, Ph.D.

Summer, Act I: Get to the Point, Orient Point

Wondering how I resolved my interest in creating unstructured outdoor play for my kids this summer? Here is the update:

It's official, we're heading to Orient, New York, population 709 (2000 census), for some mom-grown, homespun, wetlands education, wildfowl watching, surf skimming, journaling, and (fingers crossed) not-so-much cabin-fevering fun!

I found a sweet cottage that was just slightly more money per week than I would have spent on camps, plus. Now, I am left to plan how to structure our time (so that we don't spend every second of the day together), and I can remain on the grid partially to tend to my projects.

As always, if you have ideas, suggestions, send them along.

Stop back tomorrow for a guest post by Margaret Leeson, on summer's subtle parenting gifts.

The mother of all health reform

Wish we could point to her, call her by name. What a fabulous spokesperson she'd be. ...

Truth is, there isn't a sole woman behind the movement to reform America's health care system. There are actually dozens of highly trained, powerful men advocating for the "feminine principle" to be restored to our care model. I say "men" to make the point that the feminine principle is not about gender. It is about possessing an awareness of the language, character, and capacity for nurture.

The "mother of all health reform" is an attitude within.

As an organic set of traits for both men and women to cultivate in their adult lives, "anima" balances the masculine principle - the traits that keep us all driving toward outward success, wealth, power, and the most "followers" in any sphere we influence - with the inner drive to connectedness.

The feminine principle is, at the highest level, behind many social movements today.

Think of the Slow Food Movement. What started as a modest philosophical statement, a quest, to restore responsibly produced and nurturing food to the table, the grocery store, and the restaurant has blossomed into a series of "convivia" located around the world that aim directly to advocate for change at the local level. The Slow Food movement has inspired spin-offs: Slow Movement, Slow Money, Slow Travel and Slow Living.

Could "Slow Medicine" be next?

*******
Related
A limitation of Health 2.0: Interpersonal interoperability
Are we betting on the "me" in medicine?
Shopping for health insurance
If e-health was simple...

Medical Facts Mural #1

This morning, Regina Holliday unveiled her first Medical Facts mural at Pumpernickels Deli on Connecticut Ave., in Northwest, DC.

If you are unfamiliar with Regina's story, I hope you'll pause to read it here. Her story outlines the series of frustrations and set-backs (understatement) she's experienced while serving as principal caregiver to her husband, Fred, not yet 40, diagnosed with Stage IV Kidney Cancer early this spring. Fred is now receiving hospice care.
Regina, a mother of two young boys, is an experienced social advocate, having spent years working for special ed reform. Now she plans use her time and talent to bring attention to the issues of transparency in health care.


Links related to health reform:
Ted Eytan writes "Is it meaningful if patients can't use it?" "Read Atul Gawande's New Yorker article" (via e-Patients.net) Donate to Regina's fund

e-Health thinking on this blog:A limitation of Health 2.0: Interpersonal interoperabilityAre we betting on the "me" in medicine?Shopping for health insuranceIf e-health was simple...

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Health 2.0 and Interpersonal Interoperability

Regardless of how we handle the conversation about data and making sure that health information is interoperable across a national health platform (I know we'll get there...), another currency of healing will remain "interpersonal," but with just as much of a need for "interoperability."

That interpersonal currency is called intimacy; the ability to push on with dialog, transparency, and reciprocity in spite of an assortment of uncomfortable feelings that might come up in the process of interacting with illness or even the imminent threat of death. We all share a piece of this space.

A 37th birthday
This morning I received mail from a woman in the midst of a fight for her husband's life. He is diagnosed with stage IV kidney cancer and is in a very challenging place. He is not yet 40, she will be 37 this weekend. They have a 10-year-old with high-functioning autism and another child, just 3 years old. She is an advocate for special education and is extremely gifted.

As I read her story, it struck me that I am completely powerless to "understand what she's going through" and, yet, I (like most people) simultaneously wished to ease her burden. This is a sweet spot for interoperable interpersonal stuff, aka "intimacy."

So, when she told me that it was her birthday on Sunday, I went back and forth with whether-how-if I should reach out with an offer to bake her a cake:

Internal dialog
"She's going to think that I am off if I offer a cake in the middle of this crisis," I thought. Then, I reasoned, "Someone else closer to her has already offered a cake, so don't bother even asking." Finally, I imagined, "Offering a cake is so trite, so meaningless in the face of this kind of situation." Each of these arguments revealed that I was uncomfortable getting closer to the situation; I was scared of being overwhelmed; sucked into a conjured-up messy sick place. I know you get that.

Reaching out
Offering nothing was not an option so I wrote and re-wrote until I just typed out this very short note:

Her name,

I can feel your kick-ass courage; keep on doing what you are doing. This is a tough case and you are doing an amazing job.

Can I bring you and the kids something simple and delicious to eat on Sunday, for your birthday? Maybe a simple dinner with cake for dessert? Heck, I'll even stay to eat and clean up if you want the company.

Christine

A complicated simple
It may seem like a simple message, but I tolerated a great deal of internal dialog to feel like I got it right and didn't patronize her. Remember, when we are on the outside of a healing crisis, we aren't driving the dialog; the other side is. We have to realize a certain loss of authority and control. I hit send.

Her reply (double-checks the sincerity of my offer to bake her a cake)

Christine,

... Would you like to drop off a small cake for Sunday? ...

I was delighted! I quickly wrote back:

I would love to drop off a cake. How do you and the kids like white cake w/ chocolate frosting?

Christine

She fired back

Dear Christine,

White with chocolate frosting sounds very yummy. Thanks so much,

Intimacy confirmed
She used the word, "yummy." How unexpected.

This intimate exchange reminded me that the more we can be authentic and offer our own goodness from that uncomfortable but compassionate place, the more room we give the so-called "patient" to do what feels right for him or her.

It may be a bit sticky or awkward, but sometimes it can be quite "yummy" too.

Related:
People, not patients
Shopping for health insurance
Are we betting on the "me" in medicine?
If e-health was simple...

Trouble me

Gregg Masters, a friend on Twitter, posted a link yesterday to: The dishonesty of honest people.

After reading it, I started thinking about what kind of major disruption consumers could cause if we made room for productive honesty in the health care space.

Huge challenge, but I'll still be asking, "What would make it just a little bit easier to admit fault or frailty to a friend?"

If you knew you had an "A" already - from the friend, the doctor, etc. - would you loosen up into the truth? That's the healing space.

Take it: The Mother's Day dare

Healthy vision or foolishness?

Friends can't help but chuckle at me when I hop on my, "What we really need for the kids during the summer is unstructured, outdoor play," kick. I am used to their chiding by now.

So, when I heard, "You are swimming up stream with that idea," from our friend last night, I wasn't surprised ... 'til he added:

"Fish that swim upstream spawn and then die."

Ouch. Was that utter cynicism from him? Or am I a complete fool to believe in unstructured summer play as a viable option right here in the busy city?

What to do?
A wave of doubt flickered through me. My intuition guides me that children are curious about nature and the outdoor world from birth but that it is parents' unresolved discomfort with outdoor life that curbs their wonderful enthusiasm. Much like language; it's use your nature literacy or lose it.

The benefits
A summer in nature is an essential restorative for young, school-fatigued minds. Outdoor play is physical without being labeled "fitness." Wildness is full of great material for childhood: risk, reward, imagination, boredom.

My friend has a point ... I mean, I really don't want to burn out on this issue ... what good could come of that?

Take a hike
Deadlines for plans are fast approaching. Let me take the kids out hiking and think on it ...


Related:

• Best bonding activity for families
• The Mother's Day dare
• Coco's weekly meal plan: Kid tested
• ECO-canciousness, even at your house

Are we betting on a "me" in medicine?

Whether we discuss EMRs, online communities, Social Media, or Participatory Medicine, we are betting on the existence of a highly evolved "Me" to emerge in our medicine of the future.

This is the kind of Me that has been educated into prevention, maintenance, and balanced self care. This is the kind of Optimized Me that feels a strong sense of "agency" in the face of uncertainty; which is articulate and full of faith that less anxiety/more comfort is a birthright, even in the face of terrifying, chaotic, and painful illness experiences.

And that's not even mentioning those "ambiguous losses" -- caregiving, grief, aging, and life adjustments -- that impact significantly one's health.

I worry that betting on the existence of an Optimized Me, and building apps around that assumption is not a good bet. It flies in the face of what we know about human behavior. ...

So, as we mull through our notes from #Health2con (follow the stream on Twitter) ... my question to my tribe is: Where do we predict people will be picking up the desired highly evolved sense of self that can optimize the me in medicine? Within the family? The community? School? Is it online? Offline? Or, still TBD? Key question and one that is extraordinarily difficult to answer.

I have a bias. My bias is that some in our population are more uniquely qualified to become authorities on illness. Period. It's ORGANIC. These folks possess the temperament, the abilities, the sensory integration for leadership within the space and we ought to harvest them. Simply put, they are uniquely endowed to hold the mic for us.

These folks usually earn credibility from within, yet they also bring credibility from without to the development of their narratives. This is a very important point as they are "of two worlds."

In the Health 2.0 space, the likely crossovers are survivors who are also writers, technologists, advocates, wonks, or entrepreneurs. They are men, women, old and younger, 1st hand survivors or loved ones of the deceased. They walk significantly different pathways and speak many different languages. Yet, they possess one thing in common: their "Me" is highly evolved, reduced and polished up for the tools and techniques to circumscribe the limits of linear healing.

There are hundreds of these such healing intermediaries, who broker (and transmit) complex narratives in a variety of ways: narrow cast 1:1, broadcast 1:many; real time, on demand, visually, with sound or plain old writing.

While Web and mobile apps proliferate new "stages" for health stories - some that even beat time and geography barriers - the structure of the healing show follows the crowd pleasing, mythic format:

• I was there
• It was frightening
• This is what it felt like
• Here's how I managed
• Take good care
• This is what I learned
• Try to do this, avoid doing that
• Keep in touch

These stories become more riveting and powerful the closer you are to the illness/disease experience. So, the better we become at matching storyteller with audience, the greater the therapeutic value of the SM and Web 2.0 show. Therapy = credibility (earned) + context (delivered or found).

In closing, it takes an exceptionally primed and developmentally advanced "Me" to offer healing to others. There are strong regional as well as cultural issues at work in the creation of credibility within a healing context. Innovation in the Health 2.0 space that fails to account for tribal credibility and preferences for authority will simply not succeed, regardless of platform and marketing dollars backing it.

******************
Several rich and authoritative health testimonial brands with their affiliation:

David deBronkart - kidney cancer, influencing the development of electronic medical records
Regina Holliday - Medical advocate and muralist
Gilles Fryman - E-Patient and Founder of ACOR
Jen McCabe Gorman - Trauma, mental health
Therese Borchard - Living with Bipolar, depression
Hester Hill Schnipper - Coping with breast cancer
Trisha Torrey - Patient safety and preparedness advocacy
Patients Like Me - ALS community

Ted Eytan, MD - Kaiser and Clinnovations
Danny Sands, MD - Cisco and Beth Israel

Add links to expert/survivors/advocates below

For more check out: e-Patients.net

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