My favourite online dictionary is, without a doubt, Wordnik.

Do you think we need a social dictionary like Wordnik for medicine?

Here’s the thing. I’ve always said that the reason I’m not retaining new words is that I don’t really understand how they’re used: Wordnik remedies this problem by providing a plethora of contextual clues. Here’s a rundown of my favourite features using the examples of “fibromyalgia” and “h1n1”:

• Examples. This section pulls the oddest sentences (not intentionally, I’m sure, but the result is often very original) featuring your word from a vast array of unconventional sources, including CNN transcripts, diary entries, and classic literature.

The worst part about having the fibromyalgia is looking foward to being able to go to bed. —bettyalready Diary Entry

WEIL: I would say that fibromyalgia is a subset of chronic pain syndrome. —CNN Transcript Nov 10, 2004

Lyrica for nerve pain and fibromyalgia is now a $2.5 billion-a-year product, but smoking cessation treatment Chantix hasn’t lived up to expectations because of links to depression and suicidal thoughts. —Kansas City Star: Front Page

• On Twitter. The latest tweets containing your word. If we could somehow filter out the spammy tweets, how great would this tool be to gauge the hive mind!

• Flickr. These are some photos for h1n1. Check out the masks!

• Related. Sort of like a thesaurus. I know it looks a bit sparse (there are more under the Related tab), but compared to typical online dictionaries (some of which don’t even contain fibromyalgia), this is pretty good!

• Stats. Charts and graphs showing frequency of occurrence, punctuation patterns, and more.
• Comments. There are some good social networking features like the ability to favourite, comment, and create lists of words.

Plus, Wordnik has all the typical features of a dictionary including definitions from multiple sources, pronunciations, and etymologies.

Now, I know there are a lot of medical dictionaries out there. It also seems that communities such as PatientsLikeMe have sections that are starting to look like social medical dictionaries – for example, a search for Lyrica pulls up related forum posts, and detailed information like side effects that Wordnik does not have (click to enlarge):

Yet I feel that there might be room for something more “social” than the rigid definitions on The Free Dictionary’s Medical Dictionary (although it’s pretty good) yet more systematically organized than the PatientsLikeMe forums.

Another reason: as much as patients are being empowered by the internet, I wonder if the adventure for most even gets as far as signing up for a website like PatientsLikeMe. If a reliable, crowd-sourced, and dynamic medical dictionary could show up as the number one hit on Google for their queries, perhaps useful medical knowledge would reach the most people most quickly.

In the meantime, Wordnik is actually having a 2010 Developer’s Challenge right now, so if you’re inspired by this post, get cracking and maybe the medical community will one day owe you a debt of gratitude!

Toronto’s Medicine 2.0 scene is heating up!

Hot on the heels of my recent visit to the Center for Global eHealth Innovations in Toronto, the Center released an exciting new (and free!) iPhone app for Type I diabetics to track their blood sugar: Bant.

Bant is short for Banting, the Canadian who discovered insulin at – where else? – University of Toronto in 1921. And not only is the name stylish, but so is the design.

I downloaded the app yesterday and gave it a spin, with impressive results:

• The first screen is Readings (left), where you select the meal for which you want to add a glucose reading. Then you can simply drag and drop the appropriate marker to the desired time and concentration on the graph. The blue section indicates the goal concentration range.

• As you accumulate data points, you can view a graphical summary under Trends (left).
• Individual readings can also be adjusted from the Bant Book screen (middle), which includes the options to add text notes and/or share your thoughts via Twitter (right).

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Just wanted to post about VitalHub, the latest in iPhone + EMR — being developed and implemented in-house at Mount Sinai Hospital in Toronto!

Watch the beautiful video of it in action, courtesy of the Apple website.

The essentials:

• VitalHub allows health care professionals to access records from 66 applications being used at Mount Sinai Hospital, including those storing clinical data, reference materials, and patient information.

“We now have access to exactly what we have in our computers here in the hospital. We can get access to our patients’ data whenever and wherever we want it. Knowing what’s happening with their drugs, radiology, laboratory values, microbiology results — it really enables me to make decisions on the go.”

• Access from anywhere.

“Whether using Wi-Fi or 3G on iPhone, doctors can access VitalHub no matter where they are,” explains Dwivedi. “They can review a patient chart before they come into the hospital, whether they are at home, in a restaurant, or at an airport.”

 

• Security is provided by password and VPN certificates.

FYI, Sinai is one of several large hospitals located just down the street from U of T/MaRS/Center for Global eHealth Innovations (and also where I did my honors thesis!) so I think this is very exciting for the downtown Toronto eHealth conversation!

Yesterday, I was reading on Hans Oh’s blog that eHealth seems to be becoming “mainstream” — in that it’s cool to be devoting time, effort, and research monies towards it, there are articles on NEJM about it – and it seems that VitalHub, which is very openly promoted by the hospital, is an example of that happening in Canada. I am glad to see that people are really noticing what Dr. David Kibbe said: that actually many physicians have been happy to adopt the iPhone, but such a small percentage have adoped EMRs. It might just be that we have been waiting for innovations like this, piggybacking on technologies that are already accepted by health care workers.

We’ll keep an eye on the official website, Apple’s site, and the Baron Group blog for further information in the coming months.

Torontonians (and others), what do you think?

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.

(more…)

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.