Photo credit: Aging by BobAuBuchon on Flickr

In an archived episode of the always-excellent 1:2:1 podcast from Stanford School of Medicine, Paul Costello and Dr. Laura Carstensen discuss how life is longer than we think.

Consider. In the last century, mean life expectancy has increased by twenty years, and yet most of us complain that we have less time than ever. We must, therefore, be talking about less time in a particular bracket. The extra years are going somewhere, but perhaps “the end” is hardly in the most comfortable place.

It seems that we are experiencing a squeeze: an obsession with cramming everything —including school, job, mate, family — into the middle of life. I’m as guilty as any other! Yet then that leaves us only with “retirement”, that long grey ellipsis, with which we consume the extra years.

However, Dr. Carstensen, the director of the Stanford Center for Longevity, posits an idea that I find infinitely compelling:

Hop #1. “You can take those extra years and put them wherever you want.”

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I love the agency in that line. This is not like eating a chocolate cake, whilst hoping it will go your chest instead of your waistline. You really do have the power to take something that’s over there, and put it over here.

That’s the first hop.

So what would happen if we stretched out roles across life? Instead of exhausting our energy, enjoyment, and dramatis personae in the middle, we could intersperse all those wonderful verbs (connect, learn, share, grow, etc.) throughout our lives – and become more successful overall.

Indeed, I’m starting to be convinced that this is the remarkable gift that our generation has been given: the opportunity to improve life at all ages.

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Hop #2.

Now that we’ve established that this would be something worth doing, take another hop. And think about what this paradigm could mean for health care.

When you stretch life out, you can fit small, healthy behaviors alongside the traditional to-do list.

I won’t pretend to know what all those behaviors might be, but I want to talk about a few simple ideas.

Five Rules.

Now, In doing research for this post, I remembered particularly Atul Gawande’s outstanding 2005 commencement address at Harvard Medical School, where he listed “five rules” for his rapt audience. If you read it, you’ll see that he’s talking mainly about doctors. But in this age of participatory medicine, these are also rules for patients. Invert each of Gawande’s examples and there are incredible possibilities. Here’s my take:

1. It starts with measuring. Gawande said it very simply: count something every day. I think this is the most important step. When you pay attention to your health, even simply by observing, you learn amazing things. Count the steps you take. Count the minutes you spend at the gym. Count the healthy meals you cook. In my research, I work with wearable physiological monitors every day, and I believe they will soon be ubiquitous…then you can count it all!

2. Ask. More time means more time to ask questions about health. Perhaps the most notorious example: don’t leave it to the end-of-life to talk about end-of-life. Carstensen mentions that people don’t want to plan for a period of life that they think is miserable, but that is a self-fulfilling prophecy. Aside: Carstensen cites research that older people are actually more happy than young folks!

3. Create. Write something, says Gawande. Bear witness. Know your story, your passion, your life, because remember: that is what we in health care ultimately strive to defend. You never know how useful it could be. Also, making something public introduces accountability.

4. Connect. One of my favorite quotes from Ralph Waldo Emerson goes like this: “A thought is the blossom, language is the bud, action is the fruit.” Don’t forget to act. Socializing and forming meaningful relationships is especially important as we age.

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Hop #3.

And then take another hop: Medicine 2.0. When I look at the list above, I just know that these can all be facilitated by social technologies. Examples:

1. Track your nutrition and exercise using a tool like DailyBurn.

2. Ask your doctor a question through a secure email portal.

3. Start an e-patient blog.

4. Connect with similar individuals at PatientsLikeMe.

It starts with the aware individual, but Medicine 2.0 is an amplifier. It has spread and reach. That’s what we need.

Because if only a small set of the world ages well, there will be ramifications for all.

I just finished reading The Invisible Gorilla (and Other Ways Our Intuition Deceives Us) by Christopher Chabris & Daniel Simon, a book that I think raises compelling questions for patients and health professionals.

The title refers to a now-classic experiment in psychology:

Subjects were shown a video of people passing a basketball around. The subjects were asked to count the number of passes fitting a certain criterion. The same video also included someone dressed in a gorilla suit walking into the middle of the screen, 100% in plain view. However, when the subjects were later asked if they noticed anything unusual about the video, it was revealed that many people completely missed it!

What caused them to overlook the obvious gorilla?

Essentially, the experiment served to point out that we are hopelessly vulnerable to inattentional blindness (“illusion of attention"). And the rest of the book delves into its sibling illusions, those of knowledge, confidence, memory, cause, and potential. Truly fascinating, and profoundly humbling.

The illusion of confidence in medicine

One example from the world of medicine was especially striking for me: the illusion of confidence.

The authors discuss how we naturally prefer a physician who projects confidence. In contrast, a physician who is seen to consult a reference book during an appointment causes uneasy feelings in even the most scientific patients. We feel that the truly knowledgeable individual shouldn’t need a reference book, even though it has been shown that the more knowledge we have in an area, the more accurately we are aware of the limits of our knowledge. Worse still, we feel that they are less deserving of trust.

I also wonder, then, whether physician use of social media during and outside of patient encounters projects certain illusions.

Would you trust your doctor more if s/he used social media? If s/he had a LinkedIn Profile? If s/he offered a secure email portal? If s/he discussed your records with you via smartphone?

This is an important question.

When the AMA recently came out with its physician professionalism policy pertaining to social media, I and many others wondered whether guideline (f) (reproduced below) was too pessimistic:

(f) Physicians must recognize that actions online and content posted may negatively affect their reputations among patients and colleagues, may have consequences for their medical careers (particularly for physicians-in-training and medical students), and can undermine public trust in the medical profession.

“Undermine public trust” is pretty a strong statement! Companies continue to jump on the social media bandwagon, and I tend to think that it is partially for the trust factor. For example, a post by Dr. Ted Eytan on KevinMD also brings up this point (data from Digital Influence Index):

75 percent of consumers view companies with microblog accounts as more deserving of their trust than those without.

 

Is it possible that social media can improve trust in the medical profession, to enhance its reputation among the people it serves, to have consequences for medical careers that are transformational and supportive of lifelong learning?

So what do you think. Is it possible?

Research studies matter. Participants matter.

“Personally, you’re fortunate if you can reach 50 percent of your enrollment targets in a study involving children,” Alexander said. “Recently Spectrum looked at Stanford, and 50 percent enrollment was a successful study.” –(Stanford Daily)

That quote is painfully true. A recent conversation at the hospital got me thinking that it would be so nice to have a social network for research participant recruitment here in Canada.

You’ve probably seen ResearchMatch.org in the US, which is a beautiful initiative by the NIH that matches IRB-approved studies with volunteers based on information they provide in a profile. There should really be a site like this in all countries of the world, with every university/research institution participating. But there isn’t. And it’s so frustrating!

Recruitment is no trivial task.

As a researcher at Canada’s largest children’s rehabilitation hospital, Holland Bloorview, I have to say that recruitment of participants is probably the hardest part of what I do. We write proposals, plan intricate methodologies, and drum up massive hype, but at the end of the day, evidence is what drives this work. Evidence connects assistive technologies to kids who need them. And that’s not possible without research participants.

Getting them isn’t easy. Especially if your study is looking for young kids or patient groups that may have difficulty seeking you out and saying, “Hey! I want to be in this study!” Especially if your institution’s process stays vastly internal. These methods are common and fraught with frustration:

• Email staff distribution lists (e.g., physicians, PTs and OTs, scientists): difficult if you can’t get approved to use multiple lists.
• Post on hospital intranet: very few people seem to read these bulletins
• Post physical posters around campus/hospital: very easy to overlook.
• Visit schools, summer camps, after-school programs, swimming lessons, etc: time-consuming to set up, require travel, intrusive.
• Recruit from previous participants in other studies: what are the odds you’ll be able to find one?

It’s a minefield of difficulties. And let’s not forget that everything you use has to get by your local IRB (or REB, here in Canada). Creative recruitment methods /= ethical recruitment methods!

In the end, despite everything you try, successful recruitment probably comes down to word-of-mouth.

It’s a question of: Who do you know? More importantly, who do they know? Relationships create accountability…which in this case may mean a call-back

If it sounds like I’m quoting Jesse Eisenberg in The Social Network, I guess that’s the point.

At its heart, the problem of participant recruitment is a social networking problem.

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It’s not a novelty for hospitals to be on Twitter anymore.

Yet, when I mention that University Health Network is on Twitter, I still receive understandable looks of disbelief, wondering why would hospitals want to be on Twitter? What would they even tweet about? Isn’t one’s duration of involvement with a hospital inherently transient?

I think the real question being asked is: what’s in it for me?

If I put my ear to the ground, is the story in the soil?

The value dilemma

We talk a lot about being “of value” to our followers. I am probably not alone in the dilemma of wondering whether it’s valuable to closely monitor these hospital Twitter feeds. Setting up a custom list @effyhan/toronto_hospitals and loading it as a column in Tweetdeck certainly facilitates digestion of the stream, but is the stream itself worthy?

Let’s take a look: here.

So I’m perusing these Toronto hospital tweets and mentally categorizing them. I see mostly (1) hospital news (2) research news (3) health news. Looks like “news” is winning. But should it be?

For me, value means you are solving a problem that your followers have. I don’t doubt that one problem might be not knowing “what’s new” at the hospital, but it isn’t a major one.

Going down the list?

Phil Baumann from @HealthIsSocial has compiled a big list of 140 health care uses for Twitter at this link. Some I have certainly seen in action and support. Some I am seriously skeptical about (e.g., are we really going to live-tweet surgeries – even if it is for educational purposes?).

Anyway, it got me thinking of what’s on my own hospital Twitter wishlist. Or rather, want-to-see-more-of list. Something like this:

• Clinical trial awareness. As a researcher, I know how hard it is to connect important studies with volunteers who’d love to help. Perhaps we could provide a continuous tweet stream of ongoing trials, or like @trialx, return eligible studies based on a tweeted query.
• Disaster/event alert response. Check out the Bon Secours Health System leveraging Twitter to coordinate emergency transportation during bad weather.
• Emergency room wait times. @LakeHealth in Ohio does this every other hour. Could be great positive motivation for local hospitals. Especially here in Canada, where we are not meeting our wait time targets at all.

As you can see, I was able to find some linked examples for my wishlist. But I’m sure that we all have very different ideas about what creates “value” for each of us as patients and health care stakeholders.

We need to ask:

What do patients want to see from tweeting hospitals?

And what do you want to see?

This past Sunday, my pastor said: “The way you see yourself is the way you think the most important person in your life sees you.”

Photo: Patient and parent interact in the outdoor garden at Holland Bloorview Kids Rehabilitation Hospital in Toronto.

Who is that for you?

For most of us, the most important person is a family member. Pastor B cited the example of his daughter, who wouldn’t step onto any soccer field until he had voiced his confidence in her game. I was often the same way: at six years old, I was convinced that my first time trick-or-treating would be a completely embarrassing exercise, despite my satisfaction with my elaborate costume…until Mom intervened with a few well-chosen words. Even when grown up, we may have a personal vision of who we are, but that vision is so much more enabled when those close to us share it.

In other words: personhood, our story — is social.

And for kids with special needs…perhaps that is where the parent-blog comes in.

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