The Pew Research Center has released its latest report celebrating the 25th anniversary of the Web. This one looks forward to 2025, with experts’ predictions. Here’s my favorite quote so far, from the “Pithy Additions” section:
Jerry Michalski, founder of REX, the Relationship Economy eXpedition, observed, “The Internet gives us Persistence — the ability to leave things for one another in cyberspace, freely. This is a big deal we haven’t yet comprehended. Right now, we are obsessed with flow, with the immediate, with the evanescent. Persistence lets us collaborate for the long term, which is what we’ll slowly learn to do … We will begin to design institutions from a basis of trust of the average person, instead of mistrust, the way we’ve been designing for a few centuries. This will let us build very different institutions for learning, culture, creativity, and more.”
I think this has implications for health communications, such as when we post information online that we hope will persist and be used as the basis for future decisions. The “flip the clinic” movement is part of this — the acknowledgement that a doctor’s appointment is just one opportunity to reach someone with health advice.
I’m going to start thinking about examples of “persistent” vs. “flow” health information:
- Bedsider.org is persistent; @Bedsider’s tweets are flow.
- Lisa Bonchek Adams’s post about how to prepare for a port placement is persistent; #bcsm is flow.
- AIDS.gov is persistent; the AIDS.gov Facebook page is flow.
- SeattleMamaDoc 101 videos are persistent; @SeattleMamaDoc’s tweets are flow.
- PatientsLikeMe.com and SmartPatients.com are persistent; patient groups on Facebook are flow.
But to Jerry’s point about collaboration: Lisa’s blog post and the 101 posts are good examples since people added their own advice in the comments, whereas Bedsider.org is static. PatientsLikeMe and SmartPatients are designed for collaboration — how could AIDS.gov change to take advantage of that possibility? And would that be appropriate?
What do you think? Is this a distinction worth paying attention to? What examples do you see?
Scan the Pew Research Center report for other quotes and let me know what you find that seems relevant to health and health care.
If you are in a more nostalgic mood, check out The Web at 25 (my look back).
(Image of the Choptank River courtesy of the Chesapeake Bay Project on Flickr)
Joe McCarthy says
I like the hydrological metaphor.
FWIW, thinking about the dynamic / static distinction of more persistent web sites that do or do not allow comments reminds me of the flow of a naturally formed river – which may deposit silt along its river bank that in turn provides nutrients for the surrounding land (and what grows in or on that land) – vs. the flow of a human-engineered concrete waterway, in which such deposits are either prevented or viewed as a bug rather than a feature.
Susannah Fox says
LOVE that metaphor.
I always get a window seat when I’m flying so I can look at the patterns of land and water, rivers winding through the landscape or being bullied into a channel. The flow is a feature, not a bug — and so often the river will overcome what is placed in its path.
I’ve been thinking a lot this week about our earlier discussion on this blog re the use of Facebook for patient groups. The “whole person” social aspect, the idea that you can see a fellow patient’s new puppy pics along with their health status updates, turns out to be a feature, not a bug. People will share if you let them — and it’s better if you design social into your plans or the “river” will force its way in.
Gilles Frydman says
Thanks Susannah! I really love that quote. But its 2nd part is what grabbed me. More about that after responding to the persistent vs. flow dichotomy.
This one doesn’t work for me, or at least it doesn’t completely work to describe the type of peer-to-peer health care service we have worked to build over the ~20 years. I don’t think it’s a one vs the other situation, or at least not always. Facebook may be the exception since they designed a system without any internal archval of group conversations.
Remember that the initial impetus to create ACOR was to help transform the cancer listserves from a “flow” to a “persistent” story. When I started in 95 all cancer listserves had no archives because disk drives were too expensive and maintaining them also required IT expertise at universities who didn’t want to spend their limited IT dollars on something so far removed from their usual daily activities. My limited view on what can be done with “persitence” of peer-to-peer health communities is not as positive as one could think, knowing how we started. The persistence can be a great asset but I would look into building a scale of persistence. What was said a month ago, at least for medical specialties were everything move at a constantly accelerated pace, is often more important than what was said 5 years ago. Looking into the optimal timeframe of the persitence would be a great academic project. I hope a young researcher will see the value into such research soon.
In any case, you can’t have an active and valuable peer-to-peer community without the flow being front and central. Humans are amazing. They have complex memories. They are the best form of persistence. Not the machines, who can only be a curating tool for persistence. If you ask me to choose between a group with long term expert patients vs. a group with sophisticated archival and retrieval tools, regardless of what is archived, I’ll choose the first. The chance of getting great, possibly life-saving advice from a network of micro-experts remains unmatched, IMO, because it’s flow with internalized persistence. And, of course, the rarer the medical condition, the truer this is.
Susannah Fox says
I love that second part, too: “We will begin to design institutions from a basis of trust of the average person, instead of mistrust, the way we’ve been designing for a few centuries. This will let us build very different institutions for learning, culture, creativity, and more.” Truly the promise of the Web.
Scott Strange says
I think the distinction of “persistence vs flow” is a valuable one. Right now we see persistence and flow within patient communities, but little between communities. I’m wondering, as social media continues to adapt and evolve to users needs, will there be increased flow between the various communities and what benefits will that bring?
Susannah Fox says
Great question! High hopes that there will be cross-fertilization and connections among groups. I think it’s the next frontier, lots of untapped potential.
Megan Ranney says
I also think this is a really interesting concept when applied to behavior change as well as to the patient experience. We all need a little bit of “flow” — the in-the-moment motivation and tips. But we also need “persistence” — the tracking over time of our weight, mood, whatever; the ability to see correlations between our own health and the situations around us; and the ability to refer back to the things that have worked best for us.
Food for thought. Thanks!
Brett Alder says
I really like the analogies. Especially the comparisons between PLM/SmartPatients and Facebook groups. A very similar analogy I’ve used to explain the same concepts are trees and rivers.
Rivers: Flows with time, very flexible, almost impossible to organize in a highly meaningful (aggregated) way. More in line with the way we experience life.
Trees: More organized, things have designated places on branches and limbs. Easier to find things and aggregate trends, but trees are less flexible and are hard to build because everyone wants the fruit, but don’t feel inclined to build the tree. On Yelp only about 1% of users actively contribute to the tree, while 90% of users only look and contribute nothing.
Joe McCarthy says
I like the invocation of trees as representatives of persistence.
I want to quibble, though, about the suggestion that users who “only look” – and don’t post anything – “contribute nothing”.
I shared a similar judgment until I read a CSCW 2010 paper by Judd Antin and Coye Cheshire, Readers are not Free Riders, in which the authors cite numerous other studies that highlight the value of [just] reading: as an indicator of value, as contributing to the formation of an audience (motivating those who create / edit entries), and as a form of legitimate peripheral participation that may represent a gateway to more engaged forms of participation.
As more ephemeral and persistent platforms emerge to more easily afford more people more opportunities to share more of their insights and experiences online, I’m increasingly concerned that any sufficiently large number of signals is indistinguishable from noise. I, for one, am glad that not everyone chooses to speak up everywhere and/or always.
Jerry Michalski says
Thanks for liking (without using the Facebook function!) my Pew answer, Susannah. I’m sorry I’m late to the discussion here.
The quote you used has two observations that have a pretty big space in my pantheon of insights, the first being the distinction between stocks and flows, the second being about designing from trust instead of mistrust. I could talk about either for a couple hours, so I’ll just add a bit on either here.
Gilles (hi Gilles!), I completely agree with you about the value of flow. I wouldn’t want a world without Twitter, blogs, etc. The point I’m making is that we’re flooded by flow and way short on stock. Why? I think it happened in large part because the business model of the businesses of culture (radio, TV, newspapers, magazines) needs us to watch the ads surrounding the bait (which they politely call Content), so they fight all our attempts to create stock.
The other force making it hard to create good stock is the crazy, over-the-top copyright regime we live in. The Statute of Anne (1710) allowed for a max of 28 years from publication of the work. Now, because Mickey might fall into the public domain, it’s 95 years after the death of the author. Remix that!
I’ve learned how essential good stock is (half-hearted pun purely intentional) after 16 years of using the mind-mapping tool TheBrain. You can visit my Brain at JerrysBrain dot com (guessing the comments feature won’t let me post a URL). Many of you are in it already 🙂 I’m constantly curating things I care about in my Brain, which has improved the precision and recall of my wet brain. It’s also allowed me to express my beliefs and more.
I’d love to see an open, collaborative sensemaking environment exist online that lets us build together a representation of what we know and why.
Now to trust.
My current quest started in the mid-90s, when I realized I didn’t like the word “consumer.” Some years later, I realized we had “consumerized” most every field of human activity: not merely consumer products and entertainment, but also health care, politics/governance and education. A little later I realized that we’ve been baking this approach into society by designing institutions based on mistrust of the average person. We lost faith in humans.
I got to that aha! by discovering a series of mavericks who had turned their disciplines upside-down by proposing ways of acting that start with trust. Wikipedia trusts people to come in and “Edit this page” with care. Some don’t, but most do. Unschoolers trust that people are curious and eager to find their role in the world. The Shared Spaces movement trusts pedestrians, bicyclists and drivers to make eye contact and not kill one another at intersections denuded of traffic lights and such. I can go on.
I’m just learning how to explain all this, so all comments and critiques are way welcome.
Joe McCarthy says
Jerry: thanks for taking the time to elaborate on some of your insights & experiences here, co-creating the kind of blog within a blog that Susannah consistently cultivates on this site.
[Aside: among the mechanisms that encourage rich exchanges of ideas here is the fact that URLs and other embedded HTML are allowed, making commenters more like first-class citizens (I wish all blogs allowed this). As an example, here’s a direct link to jerrysbrain.com.]
WIth respect to collaborative sensemaking, you may be interested in (and may well already know of) the work of Howard Rheingold. A nice overview of some of this work in this area is provided in a Forbes article on Mind Amplifier: Howard Rheingold And The Value Of Convivial Tools.
Your description of consumerization reminds me of Douglas Rushkoff’s book, Life Inc.: How Corporatism Conquered the World, and How We Can Take It Back. You may already be familiar with this, as well, but I wanted to mention it as the book has influenced my thinking on consumer culture more than anything else I’ve read, especially with respect to the extraction, exploitation and externalization that characterizes much of modern capitalism.
Jerry Michalski says
Ah, naked URLs! Thanks, Joe.
Howard (hlr) and I are old friends. I interviewed him about online community just before his book about it was published. I’ve been a guest in his classroom at Cal. I love the way he’s curating tools for infotention, and will pay a bit more infotention to them now 🙂
Doug I know well, too, though we don’t go back as far. I tell the story Doug tells in the intro to Life Inc (I think it’s there) often, about when his family moved from Long Island to Westchester (or some similar “upgrade”) and they lost the block party that happened spontaneously around the shared BBQ in the cul-de-sac park, it being replaced by each home with its own BBQ and the protocols of inviting/etc. A nice story about how affluence often snips away those casual things that help us depend on one another and build community.
Here’s a link to other critiques of consumerism in my Brain: https://webbrain.com/u/12oi
On persistence (or curated stocks) in health care, I’m struck by the vast body of research on different conditions which might be woven into better context (as a small example, MS in my Brain: https://webbrain.com/u/15qb), plus the practical wisdom coming out of communities like CureTogether, Lifehacking and the Quantified Self. There seems to be a small trend toward publishing the data and results of studies that don’t get published, which would be super helpful as well.
All of which is a side dish to people empathizing with and helping other humans.
Mark Feinholz says
I’m interested in figuring out how to get persistence from the flow. I’ve interviewed many patients who are not interested in the ‘social’ chatter of patient communities and/or are not interested in engaging online but who deeply respect the wisdom that comes from others who are also living with their disease and would like to learn from it.
Gilles Frydman says
that’s exactly why we have communities like Smart Patients and ACOR: to allow people to present their individual and current medical story and get feedback from expert patients who can discuss at a surprisingly high level of scientific discourse, but in lay language.
Jerry Michalski says
Mark, one thing I forgot to mention in my reply is that by persistence or stock I mean more than the mere indexing of the flow. We also need some intelligence added, some curation. This might be done by smart software, but more likely requires humans who might do something as simple as snipping the best, most significant bits from a longer conversation and presenting them separately. Or they might do deep analysis and create a systems map. All efforts are useful.
I think the key is to find out who those people who love to curate are. Locating the curators might take proposing a mission, or a challenge or a game to groups and seeing who rises to the challenge.
Sometimes those people are hiding in plain sight because they already have the skills and are already doing the curation, just not in any systematic way, or in a way visible (online) to others.
Gilles Frydman says
I am in full agreement with Jerry. Human curation remains unmatched and may remain so for a long time.
As far as finding the curators, it seems that in medicine, at least for anything close to belonging to the long tail, the network effect is astonishingly good at promoting those naturally able to do great curation. It’s an aspect of the network effect that has not been sufficiently studied, although Alex Pentland has been writing about it in his latest book, “Social Physics: How Good Ideas Spread — The Lessons from a New Science” http://web.mit.edu/newsoffice/2014/social-physics-0304.html. I am having a blast reading it.
Susannah Fox says
I agree, based on the fieldwork and interviews I’ve conducted with patients and caregivers, observing their communities and individually.
When I ask people what has made the difference in their health care choices and their lives, the answer is nearly unanimous: finding someone – or a group of someones – who share their diagnosis, who can give them advice.
When I then ask how they found that person or group, the answers vary, but a common one is: I stumbled on a blog which led me to a community. The person I’m talking with often says things like, “I stayed up all night and read every post and every comment. I felt like it was written just for me.” The thirst for a “just-in-time someone-like-me” is so strong that when people find a source, they chug it down and look for more.
So, my advice for Mark: encourage your patients to look for that source, whether online or offline. You might give them some tips about which words to use when they are searching, whether a broader term to describe their condition or a more narrow one, plus the keyword “blog.”
Now my question for Mark (and any others who might want to answer): how would you feel about connecting two patients in your own practice, one who is a little bit ahead of another on the same path? How would you feel about doing a few searches and vetting some blogs and communities for yourself, then recommending those to your patients? I’d love to hear more from the clinician side on this topic.
Susannah Fox says
doh! I just did a little due diligence and checked out your website, Mark, and I realize that you’re NOT a clinician, but a health geek who serves in a different way. I hope my question still stands, for you or for any clinician who reads this: what would the world be like if health professionals recognized the power of peer-to-peer health care and helped patients and caregivers connect with each other?