Tell me a story and I will follow. Tell me your story and I am so on board it’s ridiculous.

I work at a children’s hospital that has a blog. But Bloorview Kids Rehab does more than post. It tells stories.

• “Lena distracts herself by threading bravery beads onto necklaces — each marking a painful procedure or special accomplishment.” [+]
• “Taryn, a girl 10 days his junior, is Jake’s girlfriend. This incredible blond-haired girl with deep dimples on both cheeks donates all her tooth fairy money to PMD research so she can help find a cure for Jake’s disease.” [+]

Note that it’s not just the facts; it’s the style. It’s like being there. Parents of children with disabilities even guest-post:

When my son with disabilities was younger, I often felt a failure because I still grieved for him. Why did I feel sad, mad, guilty and anxious – when I adored my son and he brought me such delight?

And that makes the BLOOM blog stand out.

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I’ve been thinking a lot about this storytelling business.

I just finished reading Tribes by Seth Godin, which argues that leadership requires a manifesto. I think that the manifesto is a story. It resonates because it is so intensely personal.

Who are we? How did we get here? What will we achieve?

One facet of Medicine 2.0 is caught up in the toys: like iPad for EMR – Twitter for pandemic-tracking — even my own research, an emotion recognition engine.

But we must not forget that the central unit, the ideal granularity of our work is always the patient. The patient, who has the need. Who lives the story.

The story is important.

Lest technology – heck, anything – subsume the patient, we need to tell better stories.

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This is a story about today.

So you’re a patient. You’ve been waiting a long, long time. This place never gets better. Even though this is “your appointment” and “your day”, despite knowing that the doctors are so, so nice — wonderful, really – you find yourself cringing at the unmistakable “busy” in the air.

We’re two hours behind schedule, you hear someone whisper from behind a pulled curtain, and you start to feel foolish.

Maybe you shouldn’t ask this question, you think. Maybe you need to do some more research…

Which is ridiculous, since research is all you’ve been doing! Even though you’ve been saving this question, carefully Google-searching, bookmarking, even scanning scholarly articles in foreign journals about the wrong gender and the wrong age bracket.

The unease unclenches and clenches again like a fist in your stomach.

Finally, they come in and probe, and smile, and reassure – doing their job you know — but still you don’t ask the question.

Why not?

You wonder how they would feel about the anxiety that has led you to Google. You wonder if what you know could possibly stack up against what they know.

Well, you really haven’t looked at everything… Maybe the forums have something to say about it. Try again next month?

So you go home. Your transport is here anyway. It’s always on time. And so is the internet.

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Today, a question was not asked.

Problem is, today could be any day.

We who work in health care may still be only a small slice of people’s lives — and I sincerely hope that their relationships with us will never define who they are — but our advice is shockingly weighty. It’s sometimes even alive, if you can imagine that.

Patients take it home with them. And it probably does live with them.

Therefore, I am disappointed when a question is not asked.

I am not sure if this disappointment has a direction or whether it is only a kind of haze – suspended, obscuring, and not quite right. But I think it means something.

It means that we have built fences. Psychological fences. We are told that good fences make good neighbours, but I for one don’t want to talk to people through fences. When we erect too many fences, at some point somebody ends up taking the path of least resistance. Like avoiding communication and seeking out answers on the internet.

A path that perhaps provides short-term relief but eventually pretty much leads to more speculation, uncertainty, anxiety.

 (Image: Makz on Flickr)

I’m not saying the internet is evil. Of course not. I’m a huge advocate of patient empowerment and e-patients. And online research and tools most certainly can help inform patient decisions, as well as provide a certain level of community and emotional support.

I just, at times, become wary of curiosity unchecked. I hope that no matter what they discover in their research – no matter how busy and efficiency-obsessed health care workers may look on a particular day – that patients will continue to feel comfortable discussing their online findings with us.

To give a related example, this brings to mind my recent post on Twitter + Group Medical Visits. There, several readers brought up the utility of a physician being aware of Twitter trending topics within the group between visits, so that they can be further discussed at the next Group Visit with input from a medical professional. So while it’s excellent to have more conversation overall, I hope that internet conversations will not be disjoint from in-person conversations between doctor and patient.

Ask the question.

If the description of your prescribed drug in a paper from Medline is making you feel nervous, speak up. If your email list of fellow (insert condition here) patients stumbles upon an interesting concern, let us know.

It’s really not “patient empowerment” if you feel powerless.

I thought it was about time to write a post about the woes of doctor-patient email.

Last week, a friend was having some issues with his phone, so his family doctor’s office couldn’t get in touch to inform him of the date of his specialist’s appointment. He didn’t know about the trouble until he popped in for a visit, which was when his doctor asked him – if he didn’t hear by a certain date – to call the specialist himself.

A good solution to the problem, but I couldn’t help wondering why email wasn’t an option. I mean, practices routinely collect our emails now, but I still don’t see them used very often. What if my friend kept having phone issues? What if he forgot to call?

Later, after the appointment had been worked out, he told me that the specialist ended up sending him an email with instructions on how to prepare for the procedure. This was appreciated, and got us both thinking about what exactly are the barriers to doctor-patient email.

What counts as private info? How do other providers deal with this around the world?

Let’s look at what’s out there.

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The same CBC article (on Canadian doctors’ love-hate relationship with EMRs) that featured Dr. Greiver’s EMR also published this comment that didn’t sit very well with me:

"Let’s be honest," says researcher Dave Ludwick. "Doctors have gone to school to become doctors, to understand how the body works and remedy that body’s failings, not to do IT. And yet with electronic records, IT suddenly becomes their job, too."

I am aware that this doesn’t exactly say that IT isn’t the physician’s job, but it’s certainly implied.

So what gives? Why the downer attitude?

If all jobs matched their job descriptions, the world would be a very foreign place.

Then I thought about the “description”…

In Canada, we have a famous diagram of the CANMEDS competencies (“a guide to the essential abilities physicians need for optimal patient outcomes”):

Indeed, our medical schools are crazy about this flower. Pre-medical and medical students do their utmost to present themselves as embodying these traits. You don’t get a more widely-accepted job description here than this…

And I think that every single petal is relevant to the EMR debate.

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