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

This post's word cloud ...


Shopping for health insurance

Yesterday I was "shopping" for health insurance online. I looked at quotes from 3 companies.

Since we are motivated to buy benefits that insure our family, I am writing this open letter to get clear on a concept that remains unclear to me. You see, I am not a health insurance broker, nor am I a fortune teller. I realize that you want to make money on me, but here is the rub: Life is unpredictable ...

We are healthy. We don't smoke. We promise to pay on time, to do the very best we can with preventive care. We'll get regular exercise, eat lots of fruits and veggies, develop friendships and try keeping our home a safe haven to the best of our ability.

But it may not be enough.

We've all seen people's lives get hurt unexpectedly. We've witnessed how virus visits even the best of us. And then there is all that other stuff that happens ... the really tough stuff that requires lots of expert attention.

As I step through your online quote process, this nagging thought repeats: What happens if we do get sick? Will you abandon us? See, I am shopping for insurance.

I know it's not personal, that you are just taking a "calculated risk" ... but somehow when you know my height, weight, age, and entire medical history it starts to feel personal.

And while you ask for a lot, you reserve the right to give very little ... perhaps just when we may need it most. That feels personal too.

So here's my question: Could you share with me how often/frequently you deny coverage to your insured if they are paying on time?

I am a business person. I like facts. So, I had this idea that if I had a chance to assess your history, I might be able to make a "calculated risk" myself and go with the best company, not the best premium quote. I am shopping for insurance.

See, I am not skilled at predicting the future. We are healthy, but how can a person ever really know what the future holds?

Since we are talking, I have another suggestion. Why don't you insurers give me an incentive to stay close to you and learn from you and your fantastic network of health experts? Seems like a shame to assess me, collect money off me, then hope for the best.

Like parenting, isn't it continuity and engagement that return the highest lifetime value on an investment in people? Seems to me that you could reposition your stance to become "making an investment" in me, not making a gamble on my future prosperity.

We are a good bet, it's true. But now I want to know if you are.

I am shopping for insurance

Gaining weight is expensive


Who dies: The bully or his victim?

When we suspected that Pip (our 5-month-old Panda Bear hamster) was attacking his same-sex sibling, Squeak, we went on alert and paid closer attention.That's when we noticed a small piece of Squeak's ear was missing (torn or bitten off). A few days later we spotted a mysterious patch of baldness on Squeak's upper back. Finally, we were convinced that Pip was hurting Squeak when a hairless chunk of raw swollen flesh was exposed on his back. Intervention time.

I separated the hamsters. I set up two cages of generally equal size and accommodation. We cleaned Squeak's cut as well as possible and hoped for the best. In truth, I anticipated that Squeak would be dead within days from infection. I even started preparing the kids for that possibility. We cried over the situation and about how sick Squeak was. I felt guilty that I didn't separate them sooner and that now we would lose our meek, nervous hamster due to abuse and harassment by his own sibling.

But a strange thing happened. Within 24 hours, Squeak, the victim, appeared to be resting better than ever. But there was poor Pip, a shadow of his former self; withdrawn, melancholic, not eating, anti social. ...

What a surprise. Pip was always the extrovert and, it turns out, a bully. That's why we were so confused to find him, the Alpha of the brothers, dead just 48 hours after separating them.

What killed Pip? Was it the separation from Squeak itself? Or was it some other odd virus?
Who knows, his sickness might have been what caused him to attack in the first place.

We buried Pip in the yard, R.I.P. The whole thing makes me wonder about bullies and what they feel when they lose access to their victims. Meanwhile, Squeak thrives. His wound is almost completely healed. He sleeps well, plays well and eats well. He is nearly 50% larger since we separated him from Pip; his healing has begun.

More pet stories:
Fish hospice and other pet tales that hurt
The kids want a puppy

Reptilian brain update

Which gets more sympathy, a broken leg or a broken heart? You guessed it ... the broken leg. "When we see someone with a broken leg, we feel his pain instantly. But it takes a bit longer to feel compassion for a broken heart, say researchers from the University of Southern California." (NPR story)

So, now that our "processing" handicap on the feelings side is on record ... what are we going to do to bring balance to the mind-body equation? How can we speed up the processing of complex feelings? Could feelings be the future of our species development? Or have we left the mind behind (temporarily or permanently) for some evolutionary reason?

It's my bias that insight into how we (and others) process (or don't process) feelings is a key component of adult development. Shit happens and knowing how to process it gives you (and your offspring) a key evolutionary advantage. With rates of addiction, anxiety and depression on the rise, I wonder whether better processing of complex feelings holds the key to healing psychic pain ... This is a thought/belief that lots of us share.

It is exciting to envision the comfort a human might receive in that moment when he/she is full of grief and a friend remains confident in her understanding about how to soothe it. She doesn't avoid or skirt or buckle the messiness of the feelings before her. He doesn't turn the complexity of the friend's stress into a Hallmark moment, with "Love, John" scribbled onto the $2 card.

What about you? Do you think feelings like grief might heal faster if we had a bit of mastery to offer one another? Might we be able to elicit healing and help "birth" feelings the way we "birth" athletic achievements in our communities?

The mind has a powerful influence over the body. If the system discourages processing complex feelings (it does) then we fail to learn how to master the flow and surge of emotion as it unfolds within us. This is a major loss of potent intelligence. ...


An idea for spring outdoors with the kids

Join a local river/stream/beach clean-up!

Why do it?

Because it is sensory! ... Because it puts your kids in touch with the impact of human trash on the environment. ... Because it's age appropriate and even the youngest among us can make a difference. ... Because it is free! ... And, lastly, do it because your kids won't know how much they love to help unless you show them how good it feels, over and over.

Somewhat related:
Spring lambing at Lee's farm
Spring break without me

More on clean-ups: American Rivers


Are you too available?

Volunteering is a great way to enhance skills, contribute to the community and keep professional structure intact as you transition between jobs, re-launch yourself from at-home mom status, or simply ride out a life transition. But volunteer beware: Giveaway remorse sucks the goodwill right out of you when the commitment you make isn't what you were expecting.

Here are 5 simple things to know before you say "Yes! I want to help!":

Who's your boss? Literally, who is in charge? This is critical. You'll want to serve this person generously and if you are not connecting to their style and vision, you will be frustrated (they will be too). Of course, if no one is in charge you'd rather know that upfront, wouldn't you?

Who else comprises the team/project? This is tricky but since so many volunteer gigs are virtual, getting formal introductions to others along for the engagement is critical. Try to assess who is working in the background of the project (paid and volunteer). You should feel excited about getting to know these folks and you might even want to have an idea about what (skills, contacts, inspiration) they might offer you. It isn't all "tit for tat" but if you practice being strategic on volunteer assignments, when you need to negotiate a higher-stakes issue your practice will allow you to be more effective.

What are the project's *stated* goals? And if they aren't stated, then back away from the gig ... fast. If you are volunteering to help a group clarify goals, then, of course, that's a different story. However, if you are serving with the intention of hitting clear milestones (helping raise $10K, starting a foundation, tutoring a child), you should know what the goals are, whether they are realistic, and how you can contribute toward meeting them.

What is the engagement's time frame? Is this a 1-day hands-on service project like a clean-up or car-wash? Or is this a complex branding mission with Web design? Are you building a digital library for a nonprofit or delivering meals for people in need once a quarter? Make sure to accurately assess your bandwidth so that you don't over commit. For instance, if you have children, and are interested in volunteering as time allows, make sure that the engagement you are considering flows in a similar way. Likewise, if you are extremely focused on re-launching and have childcare readily available, you can be more aggressive in choosing your roles and responsibilities. The key is getting the right fit, and serving with your heart and soul aligned with the work.

Lastly, what expenses are you likely to incur as you serve? This is key. Try to scope out the basic fuel, parking, transport, phone, and wireless costs you'll incur. Then add another few bucks to that figure, just in case. Make sure that you can afford to do the volunteering.

I have two volunteer projects that I have been focused on for about 3 years. They both offer independence and the ability to organize and schedule my time without a lot of group process and meetings. This is key for me.

One of the projects is picking up homemade meals and delivering them all over the DC metro area to people who just need a break from cooking. Sometimes it is grief that ails them, sometimes it is the exhausting joy of a new baby that makes them great candidates for a night off from the kitchen. I deliver once or twice a month, at most, and I usually put my kids in the van as my assistants. Even with such a small commitment, I find it is never without a bit of a hustle on my part. We are busy and making room to serve others - unexpectedly - is part of why I keep the commitment to this job. I have had larger, more public roles, but this "Driver" role remains one of my favorites for its simplicity and anonymity.

The other pro bono project I am engaged in is photography for land trusts. I shoot and process images of land parcels, scenic views, and more and donate them to Trusts to use as part of their rights-free library. My goal is to use my skills to help empower the mission of these trusts. I get so much out of helping preserve our treasured lands and it is my hope that within 10 years I'll have made a small difference advocating for smart growth and land use.

Whatever you choose to do with your time, make sure that it provides some meaningful (maybe even magical) connection to your soul.


Adventures in humility

If you are wondering where I've been lately, I've been engaged in the discovery of my own smallness ... professionally and in my spirit. When I surrender to a cycle of smallness, I am usually on my way to receiving a wonderful gift.

Because "bigness" enjoys the warm embrace of the public, we learn (early on) to play our bigness up, not our smallness. And, let's face it, BIG energy is often fantastic energy to be around ... but not always.

Big energy without clarity and self-awareness is a drain. It's exhausting to be with someone who cannot tolerate vulnerability. Especially at a certain age (40+) with a certain global economy (today's).


You won't believe this, especially given this post's title, but my husband has just appeared in my office, all upset, to tell me that someone we love dearly has been in an accident. Honest. Apparently, she will be fine, may have some broken bones, but we are concerned and need to discuss next steps. Gotta go. More adventures in humility await.