Rob's Rants

I’ve written about the idea of participatory medicine before. But having a young child (my daughter will be five in January) finally gives my wife and I a chance to see if we really integrate these ideas into our own lives. A recent trip to the dentist for my daughter gave my wife and I the idea that, although we’ve never really thought of ourselves as participatory patients, we really have worked with our healthcare providers this way all our lives. And this is something my wife and I are sharing with our daughter. Even at the age of five she gets to have a say in her healthcare and she is allowed to ask questions of the doctors, make suggestions, and encouraged to expect answers.

First, some background.

Thanks to my wife, my daughter exhibits good dental habits. She brushes her teeth twice a day, she uses dental floss (in little plastic holders for kids) and, now that she’s a little older, even rinses with a fluoride rinse. But her first visit to the dentist last year went badly and made her feel terrible.

First, my daughter is very sensitive to loud noises. Or at least noises that she considers loud. I’m nearly deaf as a post, so what bothers her seems normal to me, but to her, the “slurpy thing” (suction tube) that the hygienist put in her mouth was too loud and very disconcerting. Then, at the end of the visit, the hygienist suggested a fluoride treatment, but only if our daughter would be able to hold it in her mouth and spit it out without swallowing, because swallowing fluoride can make you violently ill. We had practiced the spitting out kind of rinsing, so we agreed. And I’m sure you know what’s coming next. Being nervous, our daughter swallowed a good portion of the fluoride, and spent several of the next hours violently vomiting.

So, six months later we announce to her one night that she’s going to the dentist again the next day. And she bursts into tears.

Our first instinct could have been to tell her that going to the dentist was for her own good (like we did with her flu shot) and that she had to do what the dentist said. But instead our first instinct was to find out what bothered her. When she told us about the “slurpy thing” we were delighted to tell our daughter that she could ask the dentist not to use it. And that instantly changed her demeanor. Suddenly she had some control … a five year-old was allowed to control what happened at the dentist’s office. Then she told us about the fluoride. We understand that fluoride has benefits for a young child, and that our daughter needs some extra since we have well water and all she gets is from her toothpaste. But we didn’t think that she needed it enough to relive four hours of vomiting. So we told her to ask the dentist, with Mommy’s help.

And that’s just what she did. When she was called to the office she (with some encouragement) asked that they not use the slurpy thing. And the hygienist agreed. No slurpy thing. When it came to the fluoride, our daughter asked if she could skip it because she didn’t want to throw up. And she actually had a conversation with the hygienist (assisted by Mommy) and they agreed that she could use a special fluoride rinse at home every day instead of the office treatment. And after she practiced for six months, when she came back to the office the next time she could have the fluoride there again.

I was so proud of her … she actually had a conversation with a healthcare provider and worked out an alternative treatment. I hope this begins a lifetime of participating in her care.

Ten years ago I was working at a large networking equipment company (not Cisco) and the big push of late 1998 and early 1999 was to help companies, or Enterprises since that term was just gaining popularity, build their intranets to “enhance employee communication.” Part way through ’99, and in between the bouts of orgasmic glee our executives had shoveling in mountains of cash fueled by the threat of the Y2K bug, someone in the organization decided that the company should put its money where its mouth was and build up our own shining example of an intranet. The VP in charge asked someone who worked for him if he knew anyone who could “write webpages” and since that guy was my friend and partner in our new web venture (Hike New Hampshire — still on the web a decade later at http://www.hike-nh.com) I eventually got the job. So in mid ’99 I was anointed with the title of Web Content Manager, and set about coming to the realization that I was doomed to fail because the position had been envisioned by management to simultaneously grow the company’s intra- and internet presence AND make sure that nothing objectionable was ever said (hence the “Manager”).

The Cluetrain Manifesto - 10 Years Old

It took about 90 days for the reality to set in that I was doomed, and for a while I felt alone. The Marketing Department refused to relinquish any control of any external pages, and other managers wanted thoroughly defined approval hierarchies for any internal content. So my title probably should have been Web Approval Queue Manager but that wouldn’t have sounded too “webby.” But then I ran across something on the web that gave me hope — posted at http://www.cluetrain.com was a manifesto — 95 theses — that truly captured everything I was thinking at the time. And there it was — a decade ago — all laid out for us. The rise of blogs and Twitter and Facebook. All wrapped into the central premise that people want to communicate in ways meaningful to them and the internet and all of it’s technologies can enable that kind of instant, global conversation. The 95 theses are important, but the initial dozen rocked my world:

Markets are conversations.

Markets consist of human beings, not demographic sectors.

Conversations among human beings sound human. They are conducted in a human voice.

Whether delivering information, opinions, perspectives, dissenting arguments or humorous asides, the human voice is typically open, natural, uncontrived.

People recognize each other as such from the sound of this voice.

The Internet is enabling conversations among human beings that were simply not possible in the era of mass media.

Hyperlinks subvert hierarchy.

In both internetworked markets and among intranetworked employees, people are speaking to each other in a powerful new way.

These networked conversations are enabling powerful new forms of social organization and knowledge exchange to emerge.

As a result, markets are getting smarter, more informed, more organized. Participation in a networked market changes people fundamentally.

People in networked markets have figured out that they get far better information and support from one another than from vendors. So much for corporate rhetoric about adding value to commoditized products.

There are no secrets. The networked market knows more than companies do about their own products. And whether the news is good or bad, they tell everyone.

Ten years and a career-change later, my dog-eared copy of the Cluetrain Manifesto (yes I bought the book — I may have read it online, but the people around me who didn’t get it needed something on paper; and this was long before laptops were ubiquitous and truly portable to enable electronic reading) still sits on my desk.

So what got me thinking about this? It was more discussion about Participatory Medicine. It occurred to me that one could substitute the word “doctor” for “executive” and “hospital” for “corporation” and “patient” for “market” and we’re really talking about the same thing. The Internet is facilitating all kinds of new conversations about health and connecting patients in ways that disrupt the traditional medical hierarchy and one-way feed of information from provider to patient. But what really concerns me is that although there has been some corporate progress (think CEO blogs and Twitter), not a lot has really changed with a lot of companies in the last 10 years.

While this doesn’t bode well for rapid progress in Participatory Medicine, perhaps people’s natural inclination for remaining deeply and passionately engaged in their healthcare, compared to their engagement level for electronic devices, might drive this process faster.

In any event … here we are ten years on and the concepts in Cluetrain remain relevant. I’m happy that I was there in the beginning and that I am finding myself in the middle of this second round.