Update (Feb. 22nd, 2010): Thanks to Kevin, MD for featuring this post on “Twitter and Facebook Can Help Conduct Group Patient Visits”! I’m very honored!

Twitter + Group Medical Visits = ?

The concept is simple. Group Medical Visits already exist. So:

• Take 10 minutes at the midpoint of the visit and have everyone tweet their feelings, keywords, anything! (with designated hashtag)
• Visualize in real-time with Twitterfall
• Discuss, discuss, discuss!

The rest of this post is about the argument in favor of the above.

Twitterfall makes Twitter parties sparkle.

I was thinking about how some “Twitter parties” revolve around a real-time Twitterfall projected on a wall.

Participants go about their party business, but constantly add tweets—appending each with the party’s hashtag (e.g., #med2) which can be fed into Twitterfall search.

The result is fascinating live information about what’s popular in the conversation.

And yeah, people are using it! Last February, the UK newspaper The Daily Telegraph made big news when they revealed that their integrated newroom featured Twitterfall projected right up “traditional” video feeds from heavyweights like BBC and CNN:

However, maybe you’re thinking: so why not just talk to people? Isn’t that the point of a party?

Sure. But I think that good topics easily get lost in a mishmash of party conversations.

I’ve sat in a meeting room with 10 people where 5 different conversations were going on and 1 word caught the attention of 8 people who suddenly perked up and wanted to be caught up on that 1 topic. Or maybe those 5 conversations were actually trending the same topic, but no one knew, so they didn’t engage with each other afterwards?

We are drowning in information yet thirsting for knowledge. How do you “see” a trend?

You can discuss, and listen, and overhear, but you’re only one person. How do you know what is being discussed? How do you know HOW it’s being discussed?

And what does this have to do with medicine?

The New Health Care needs to address some very 21st-century problems.

Support groups have been around forever. Some successful ones are electronic, like the wonderful breast cancer listserv of my home province, Newfoundland. Some are quite informal, just common folks getting together.

Now, as our life expectancies continue to grow, and we’re faced with the very 21st-century challenges of prevention of disease and management of chronic conditions, these group settings become very important.

Patients are recognizing the need to supplement the doctor-patient relationship. Patients want to talk to each other. Especially if they’re going to be in the tough spot for the long haul. This is why a community like PatientsLikeMe — targeted especially to incurable conditions — has absolutely thrived.

But they can’t do it alone.

Physicians should give it a lurk, sort of.

DrV coined the term pre-emptive online health literacy a while ago – i.e., knowing what your patients find when they consult Dr. Google and Dr. Wikipedia.

I wonder, shouldn’t this include some awareness of what your patients are saying about a condition/disease on the internet?

On occasion, wouldn’t patients benefit from a physician’s ability to confirm, explain, or debunk a trend that’s been propagating among a group?

But you’re probably not going to start skulking around corners or lurking in forums.

It has to be efficient. And non-intrusive.

The case for Twitter-supplemented group medical visits.

First, Group Medical Visits 101 (adapted from champsonline):

• You receive an appointment to see your doctor together with 10 – 20 other patients who also have the same condition as you (e.g., high blood pressure or diabetes)
• You get to spend about one hour with your Doctor discussing your condition and any other pertinent health problems that you may have.
• You also get to speak to a Nutritionist or Health Educator and to learn from other patients who are also in your group

The Group Medical Visit is like the party.

We might get lots of great discussion, but wouldn’t it be nice if a portion of the visit could focus on addressing “trending topics”? So, once again:

• Take 10 minutes at the midpoint of the visit and have everyone tweet their feelings, keywords, anything.
• Visualize in real-time with Twitterfall.
• Discuss, discuss, discuss!

*Alternatively, Twitterfall could be used for traditional non-face-to-face Twitter parties of a set duration. People from different locations, including remote ones, get terrific real-time information, but it’s easier to analyze than a text or video chat. And you don’t necessarily have to be sitting at the computer the entire time.

The Tweet Stream is organic.

Advantages:

• ideas arrive in parallel, yet are still discrete and understandable
• less intimidating than yelling out an opinion
• both individual words and longer ideas can be trended
• trending topics and phrases auto-generated (the big concerns rise to the top)
  Update (Feb. 6th, 2010): Ok, I just checked and Twitterfall actually doesn’t have this functionality yet. But Tweetdeck does! There’s a button at the bottom of each column “Show what’s popular in this column” which comes up with a tag cloud of terms, ids, and hashtags.
• you get way more ideas than a traditional whiteboard brainstorm

Another way to look at it: the Google-fu argument!

Tweets are great. 140 characters is just enough to accommodate concepts…but also phrasing, context, and emotions.

For example, don’t you ever wonder how people’s Google search styles vary?

Your Google-fu ~= my Google-fu!

Dr. Schwimmer (@JoshuaSchwimmer) posted this great screenshot on Google’s search suggestions for the phrase “doctor’s are”. Just look at the diversity (and perversity?)! And that’s only given the first 2 words of the query!

Now imagine a Group Medical Visit. What are the concerns of the 20 people in the room? And with what terminology would they express themselves if left to their own devices?

It’s just too hard to identify these subtleties in a crowded room. And the New Health Care is supposed to be about finding your voice.

So that’s the idea!

For a fascinating example of simple Twitter meta-analysis, have a look at:

• Chew and Eysenbach’s abstract
  Pandemics in the Age of Twitter: Content Analysis of “Tweets” During the H1N1 Outbreak

No related posts.

But today I read this article about Whole Foods and its Pinterest account. I found the marriage bizarre at first, until I got to the screenshot:

Check the left sidebar, where Whole Foods describes its account thusly: These are just a few of the things we love……and we love to share them with you.

And like that, it made complete sense. I hope I don’t sound histrionic, but it was like Whole Foods became a person — a personality, a beating heart behind the plaster. And why wouldn’t brands have pinnable interests, anyway? Explains Lisa Barone (the article’s author)—:

“Whole Foods also uses Pinterest to show what the company is about at its core. What I like about the Whole Foods Pinterest board is that, even if I’ve never had a single encounter with the brand, based on the boards I immediately know what it represents.”

The boards say it all:

“Edible Celebrations” & “Thankful for Thanksgiving” – Besides the obvious food pornography, there’s the sense that the brand is about celebration. Festivity. The good of life. Family and friends.

“How Does Your Garden Grow” – Outdoorsiness. DIY ethic. Freshness. Local.

“Whole Planet Foundation” – Is screaming: “And by the way, we care like crazy.”

But, hey, medicine is a brand too, right?

So next step: I wondered, what would I, future medical practitioner, pin?

What “more” might we want our patients to know about us?

Levitating Pinterest boards started popping up in my imagination. Some are obvious (staff and patients, charity events, research breakthroughs), so here are a few other ideas that I believe leverage the essence of Pinterest, which is, can your topic be represented using images only?:

1. History of the practice/hospital, in pictures (example Pinterest) — If you’ve ever looked at current medical Tumblrs or Pinterests, there’s A LOT of interest in vintage medical photographs (a la LIFE Magazine’s famous photo essay on the Country Doctor in the 1940s). They tell so much about where the practice came from and the community it has evolved to love and serve.

2. Medical infographics (example Pinterest) & fact vs. fiction — Could be a hit for educating patients on prevention, especially if concentrating on community-specific topics (e.g., how can a Toronto family doc help her patients understand that they need to get X units of Vitamin D in the winter?).

3. Medical illustration and literature (example Pinterest) — As with the vintage photographs, there’s huge interest in Gray’s-style anatomical sketches, art celebrating the human form, medical humanities. Besides just being beautiful to look at, such a board could inspire patients and families to become more expressive and creative during the illness experience.

To summarize, I love to see practices and hospitals blogging, for sure, but sometimes a picture really is worth a thousand words.

Especially since, judging by the state of most hospital social media engagement, you’d think that all people do is culture stem cells and fundraise.

Maybe we can show our communities a different side once in a while!

No related posts.

As you might have noticed, Hospital Songs has been on hiatus for about 6 months as I’ve been adjusting to my new life as a medical student at the University of Toronto.

In that time, I’ve slain (however dubiously) anatomy, embryology, histology, haematology, and respirology/cardio/pharm…

…And now, well rested, I look forward to bringing you all new content!

No related posts.

I’ve experienced a renewed interest in Q&A thanks to Quora .

Founded in 2009 by former members of the Facebook team, Quora is a repository of high-quality questions and answers. Not an oxymoron.

The quiddity is that you become valuable on Quora not by dint of the number of followers you have, but through the quality and reputability of your answers. This is possible because users tie their answers to their real names and real-life credentials. Let’s say you want to know about what it’s like to work at Google. Someone from Google will answer the question and cite his experience. It’s win for the asker, who can cut through the speculation, and win for the answerer, who builds his brand and credibility. It’s been said that the catalogue of questions and answers you accumulate through a Quora identity becomes a functional resume — a LinkedIn that actually means something.

It remains to be seen whether the quality of Quora can be sustained as the userbase scales. Currently the site relies heavily on moderation by the redoubtable Admin Team, as well as the vim of its whip-smart cadre of early adopters (think pretty much all of Silicon Valley), but I have high, high hopes.

~

As I use Quora and other sites like it, I’ve been thinking: might ResearchMatch (see my previous post) provide more value by adding high-quality Q&A?

Consider Ebay’s Q&A, which you can harness to learn more about an item. Is it really vintage? Any tears, stains, scratches? We’re smart consumers and we want to know before we “buy in”.

Research studies are, likewise, about buying in. The challenge: to translate the passerby who may be staring down your call-for-participants poster — weighing the value proposition in their heads — into the engaged participants sitting in your lab.

Having gone through the process myself, I think we can do better Q&A. IRB’s traditional approach is to have investigators think up all the questions that the patient might ask, write up answers, and send them to the prospectives. If there’s anything we haven’t covered, the subjects can contact us. Generally, these pre-emptive questions are written to high standards; the ethics boards do a great job of making sure we do. But I have no idea if they reflect the reality of a parent’s concerns. I have no idea whether other prospectives share these concerns. Moreover, we provide this very nebulous “space” of “Call/email us!” for the potential dialogue to reside.

When I contemplate a better “space” for the dialogue, I think user-voted FAQ. I’ve taken a few screencaps of Quora to show how this might work.

There would be a home page for each “open” study, like a Quora topic page (see above), established by the Principle Investigators.

• The user is presented with a feed of “Open Questions”, and a feed of “Best Questions”.
• Anonymous prospectives add questions; they can also answer one another’s questions and vote answers up or down.
• Answers remain anonymous, except for those contributed by the Principal Investigators.

At any point, the PIs can create an Answer Summary, synthesizing the best of the answers and providing some citations:

Another feature I’d like to borrow from Quora is the ability to “follow” a question.  The Options menu additionally provides the machinery to tweak privacy and even redirect the question.

A word on client privacy — yes, even anonymous posts may not be enough. So this would work best in an existing framework with proven protections, such as the NIH’s ResearchMatch system, mentioned above.

~

Essentially, in this post I wanted to throw an idea out on how we can address participant concerns in more efficient and more engaged manner.

A dynamic user-curated FAQ would be informative, engaging, and help to eliminate redundancy.

There’s a barrier to any act or choice, and taking part in research is no exception. Maybe you really are itching to know: “Why is the cure for cancer so elusive?” It may be a natural corollary to: “Will study X at Y university really help?” But how many people would ask? Where would they ask? And who would answer?

Take a look at any of the popular medical questions on Quora right now. The answers are a great cross-section of who’s available in online communities. We have medical students, health care workers, PhDs, and lots of (much-needed) people who have good old fashioned common-sense and life experience. People who can provide authentic perspectives on research participation. I feel like it would be missing out not to take advantage of that, as long as we also provide controls for PIs to vet the information.

Additional Resources:

Health Is Social: Why Physicians and NPs Should Consider Quora

DivaBioTech: Why Quora is Perfect for Life Sciences and Health Care

KevinMD: Quora in Health and Medicine, What Doctors and Nurses Need to Know

Related posts:

1. More ResearchMatch, Please: On Social Media for Recruitment of Research Participants

Reading about Münchausen was eerie for me. It used to be that the medical charade was carried out in-person: I certainly remember those dank scenes in “Fight Club” of an anonymous narrator faking terminal illness to gain entry to the relevant support groups. But I have to express that even viewing the phrase “faking illness online” was jarring. I became filled with questions about…stories.

We are proponents of participatory medicine. We believe in storytelling. We stand on high and promulgate confidence in blogs, wikis, and online patient communities. Not too long ago, Dr. V highlighted an NYT article showing that patient narratives can improve clinical outcomes. Outstanding.

However, a story is still a story. Does the story necessarily introduce an element of fiction? Because we need to “fake it to make it”?

And if the answer is yes, how much fiction is too much?

~

We Are Squishy Water Balloons

Dr. Sheena Iyengar studies choice and is an inestimable source of inspiration to me. Of storytelling, she says this:

For animals, the confinement of the body is the confinement of the whole being, but a person can choose freedom even when he has no physical autonomy. In order to do so, he must know what choice is, and he must believe that he deserves it. By sharing stories, we keep choice alive in the imagination and in language.

Choice, in this view, is not to be taken for granted. Choice is something to be fed and nurtured. Most importantly, we believe in choice when we see it in others.

Why generate choice from stories? Because it may not be easy to see it others.

A felicitous analogy may be drawn to squishy water balloons²: “We bump up against each other, create ripples and waves inside each other, shape each other, but we’re still totally separate.” You infer what’s going on inside me based on what’s going on inside you, and vice versa. You might end up thinking that because your particular illness experience seems hopeless, that hope does not exist?

The power of stories is their translation of our insides to a form that can be propagated. To keep choice alive in the imagination and in the language.

You still might not believe that the story can apply to you, but at the very least, the possibility has been liberated and placed into that “shared space”.

A Tale of Two Narratives

So, we love stories.

The difficulty is the fine line between inspiration — the purity of a wish, a hope — and outright lies.

Münchausen by internet is unfair to the online communities it victimizes. It has preyed on the time and emotions of real people. I cannot condone it. Still, the perpetrators, from another perspective, may have been simply trying to edify a wish to escape from an illness of another type, of depression, of underappreciation, of those chronic, mundane sufferings that are overlooked but so very real.

They may have felt that they were simply making a choice. Ironically, it was a choice to be publically ill. And it resulted in a less-than-inspirational contribution to the collective imagination.

But is this really so hard to understand?

All of us have good days and bad days. I have often wondered if every day, whether you are a patient or not, we each make a million unpublicized choices between an “illness narrative” and a “wellness narrative”.  Which means that neither is the real truth. We are not one or the other. Perhaps the difference between this and Munchausen is that we continue to make these infinitesimal choices all the time, because health is a process.

And if the struggle between the two is the truth, then what can we do about it?

~

I don’t know what in particular we should be doing to “police” the world of Health 2.0. It leaves a funny taste in my mouth to even mention that word in what should be a vocabulary of sharing and collaboration. But we should talk about it, for sure.

I am glad that most patient communities have user agreements these days.

I was also happy to find the Healthcare Blogger Code of Ethics (and Patient Blogger Code of Ethics) early on in my blogging adventures. The community there is ever-growing and I am proud to be a part of it.

Do you have any thoughts?

Notes:

¹ For more on Munchausen, see these articles from Wired:

They Think They Feel Your Pain

Q&A: Munchausen By Internet

² Not my analogy! See theory of autopoiesis (Maturana and Varela).

No related posts.

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.”

*

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.

*

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.

*

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.

Related posts:

1. Toronto University Health Network’s Social Media Posters: Photo
2. Fibro-what? A Social Dictionary For Medicine
3. More ResearchMatch, Please: On Social Media for Recruitment of Research Participants

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?

Related posts:

1. Toronto University Health Network’s Social Media Posters: Photo
2. Fibro-what? A Social Dictionary For Medicine
3. More ResearchMatch, Please: On Social Media for Recruitment of Research Participants

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.

But you need a very special network. If you built it, they will come.

What am I not talking about?

• Extant networks like Facebook and Craigslist: This wasn’t what these networks was built for. Some researchers have taken out ads on Facebook, but it just seems sketchy to me. Craigslist Volunteers is spam-infested and just not the right place for something that may involve sensitive health information.
• CureTogether and PatientsLikeMe: These are terrific communities, but their research participation focuses on mining data from the user base for their own studies, not connecting those users to outside studies.
• Institution-specific “communities”: First of all, community is a generous word. A simple HTML page or bulletin board doesn’t cut it. Especially if its buried under a mountain of other links. I recently was appalled to find that my department had merely one study (expired, of course) on its so-called listing.

That said, ResearchMatch is a great standard.

Seeing ResearchMatch makes me happy because it is special. It is secure, IRB-approved, and ambitious in scope. The FAQ says that it is not just for clinical trials. Currently, over 500 researchers and 11 000 volunteers have signed up. There are 220 active studies and 54 research institutions.

Expansion!

I would love to see more researchers and volunteers. I would also love to see more social networking features (but perhaps these are limited by the fact that profiles must remain anonymous). I would love to see this in other countries.

We have to make it as simple and easy as possible to participate. I am absolutely convinced that people want to participate, but they often don’t know how.

I actually had a parent of a young participant come up to me and ask me point-blank to make this social website happen in Toronto.

And how about this quote that I saw on a blog:

“I am going to have my entire family sign up to be part of ResearchMatch.  Imagine if everyone did the same.”

Yes. Imagine…!

Related posts:

1. Toronto University Health Network’s Social Media Posters: Photo
2. Fibro-what? A Social Dictionary For Medicine
3. Does Social Media in Medicine Help Or Hinder The Illusion of Confidence?

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?

Related posts:

1. Featured Post: Twitter + Group Medical Visits = ?
2. I Think It’s Kind of Useful: My Quick Argument in Favor of Twitter.
3. Mount Sinai Hospital’s VitalHub, the Latest in iPhone + EMR

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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Personhood via parent-blogging

As you may know, I am a graduate student at Canada’s largest children’s rehabilitation hospital, Holland Bloorview, and I frequently interact with kids and adolescents who are living courageously with profound disability and/or chronic conditions. Here, our concern with personhood is paramount. After all, any illness experience can deplete one’s personhood, but perhaps none more so than a complex chronic one.

Consider. Have you ever witnessed a child wilt under labels like “incurable” and “diagnosis of exclusion”? Or the vulnerability of a young patient with locked-in syndrome who cannot indicate in any way his feeling to a caregiver? The helplessness as he or she is worn down by the day-to-day challenges of illness management?

How easy it must be for these children to lose hope and energy. And, in light of financial troubles as documented in the latest NEJM, to see themselves as burdens. They need to know – and to feel in every look, word, action – that the way they are seen by the person they love is all kinds of poignant.

That’s why I love that there are more and more instances of parents of kids with special needs turning to the blog.

Aside: check out HopefulParents for a great list.

They are exhorting themselves, each other. Bearing witness to the journey (sometimes struggle), yet also showing their adoration. Because we all deserve a story.

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A new family album

I wrote a few months ago about why hospitals should tell good stories – real stories. Well, parents who tell stories are like that too. I believe that the act of storytelling assigns value to our experiences – the good and the bad. Storytelling celebrates life. Doesn’t it?

And thus, the blog is the modern equivalent of the dusty family album. Except it’s not so dusty. And your album can reach out to other albums.

What’s the advantage of a blog? There are certainly other ways. Good old fashioned talking. Tweeting, posting on forums. But like @HealthIsSocial pointed out this week: the blog is special. It is the original source of linked content and it is on your domain. Not just bit.lys or pith. Blogging has also really matured in the last few years. The format is less restrictive; there are many ways to export, archive, and search. What better way is there to express yourself and to do so memorably?

Potential for embarrassment? As with all public endeavors, parent-bloggers need to make common-sense decisions on what to share. But once again: the way you see yourself is the way you think the most important person in your life sees you. How do you want your child to see themselves? Use that to orient your blogging voice.

Is it narcisstic? Well, yes. I like the way this blog put it:

Does that make parental blogging “about us,” and not about our kids? Of course. But all narrative writing is about the author, and his or her unique window on the world….

 

Poniewozik is right on one score: some of the worst writing and blogging in this genre is so much navel-gazing. I’ve decried that trend myself. But therein lies the value of community. We all keep one another in check. The best parenting bloggers don’t simply tell stories about their kids: like this recent posting by Dooce, they tell stories that serve as flash-points for conversation. And damn, do we conversate. We bicker; we debate; we call each other on our bullshit. We do more – much more – than marvel at the precious miracle of our little Boopsie’s first steps. We debate hot-topic issues like cervical cancer vaccines for teens, whether vaccinations cause autism, sex education, the grief of parents with stillborn children, and the merits and demerits of the family bed. We share tips on how to save money, spend more time together, and be better parents in general.

I hope to see much more parent-blogging in the future. Do you agree?

*P.S.: Apologies for the long hiatus. I went home to visit my family for a while. Glad to be back in Toronto for more peds research and of course HCSM fun!

– Elizabeth

Related posts:

1. Our Hospitals Put up Posters on Tactful Medical Blogging
2. Storytelling 2.0: Part I – Telling Better Stories in Medicine