We hear people talking about "social media" – Facebook, blogs, Twitter and all that – and I often hear folks wonder, "Is this making any difference or is it just another way for idiots to waste time?"
Well, in healthcare it's sure making a difference. For one (big) thing, it brings together people who very likely would never have connected. Like, I mentioned Albert Schweitzer, and I just got a reply from the president of the Albert Schweitzer Foundation.
That's amazing, and so is the context in which it happened: patients being welcome in discussion of changing healthcare. This post shares what happened, and my perspective as an observer of these social media changes.
12/21/08: Paul Levy writes What if?, inviting other Boston hospitals to share ideas and information to try and eliminate common causes of hospital-acquired infections. In one comment, I wrote:
I sure love the idea of cooperating across hospital lines. And I can't imagine anyone with the spirit of an Albert Schweitzer who'd say no. (And yeah, that's the spirit I want in my medical community.)1/15/09: Paul writes What does it take?, noting that not a single hospital replied to his invitation, not even to say "Nice idea, but you overlooked x, y and z." He cites that day's big news story that pre- and post-surgical checklists reduce errors. He comments that people from all other walks of life think checklists are an obvious way to be sure you didn't forget something, but many people in healthcare prefer to "go commando" (my term - no checklists), like "we don't need no steenkin checklists" (also my words, not Paul's).
A vigorous discussion has ensued - 38 comments so far - some doctors saying change is hard, another observer says changing culture is hard, a few patients piping up. I wrote an irked comment and posted here and on the e-patient blog, and got some constructive criticism. I commented again, repeating my Schweitzer thought. And here's what I got in response:
To what e-patient Dave said:My mind got blown as I wrote my reply (the links are worth chasing if change interests you):
Albert Schweitzer taught: "Example is not the main thing in influencing others, it is the ONLY thing." Atul's report on Seattle confirms this once again. It's seeming clear that what Paul is saying on his blog has limited influence on other academic centers, at least in Boston. But if/when we at BIDMC have a demonstrably safer hospital than we do now, and medical, nursing, and other staff who are thus even more proud than of working here than they are now (and thus attract others), and if/when we are then attracting patients who trust us even more than they do now, THEN there would be no one in health care who wouldn't listen (or at least look!).
The different views expressed here are unlikely to be resolved through discussion. Schweitzer said "My LIFE is my argument". What Atul reports from Seattle and Jordan is a pretty powerful argument indeed. ...
Lachlan Forrow, MD
President, The Albert Schweitzer Fellowship
Director, Ethics Programs, BIDMC
Lachlan, thank you so much for your kind, informative and illuminating response.And, just to be complete, I popped out of humility mode and ended by returning to the point:
I'm always humbled and grateful when a doctor takes time to teach me something. Sometimes I speak strongly because of my passion for a new world of healthcare, where patients and professionals collaborate in sharing responsibility and creating solutions. (See October discussion of the forthcoming Society of Participatory Medicine, and the recent discussion Embrace Knowledge Symmetry, as BIDMC's Danny Sands put it).
But I'm keenly aware that in absolute terms I don't know squat compared to the vast elephant-sized picture. So I'm always a little afraid to assert a position, and I'm always grateful when someone teaches me.
It's wonderful that social media and increasing transparency are letting lay voices in on the conversation. In developing the idea of participatory medicine, the e-patient scholars group has largely talked about patients participating in their care. But it's evolved beyond that: on his own blog, Ted Eytan MD led a discussion that defined Health 2.0 as "...participatory healthcare. Enabled by information, software, and community that we collect or create, we the patients can be effective partners in our own healthcare, and we the people can participate in reshaping the health system itself."
I participate with all humility, I hope, and I'm grateful for the chance.
--So, like, what is UP with hospitals (and perhaps their boards?) not "participating" in sharing information and ideas as the post suggests?? My guess is that whatever is stopping us, it's causing as much harm as a disease.The comments are where bloggage gets really productive, people. Without comments, blogs are one-way. You should comment more, here and everywhere. You do get to speak up now.
Hey Dave,
ReplyDeletethis is as good a place as any to make a point that is both obvious and obnoxious. As patients, I agree that we want lots of communication, lots of sharing of best practices, lots of improvement in the health system. As a provider in a "competeing" system, I also see that we've created Darwinian pressures that obstruct such sharing. Yet, even in Obama's reform measures, we do not have any new plan to change those incentives. Even Levy's blog is widely seen as just another strategy for promotion of his, and his insitutions profile rather than an honest effort to improve care among many providers.
Hi Dan! It's a pleasure to see you here. (Everyone, Dan Hoch is a valued colleague of mine in the e-patient working group. Among other things he's a founder of Braintalk, a great network of e-patient communities about neuro issues.)
ReplyDeleteI'm going to venture a reply that feels risky, because it might get sensitive. But I know Dan and I both have a greater commitment to helping patients than to anything else.
So, Dan, I ask this without having any opinion or any idea what the answer is:
You say Levy's blog is widely seen as just another strategy for promoting his own profile and BIDMC's profile, and not an honest effort to improve care. That's saying he's widely felt to be a hypocrite, right? Isn't really up to what he says he's up to?
Can you share with me who sees it that way? I'm sure there are those who feel that way within the Partners Healthcare organization - competition is competition, and I've worked in enough organizations to know what happens in competition. But what about other places?
I personally haven't heard that from anyone other than a direct competitor, but as I say, I'm hardly connected to people in the national hospital community. So please do share away.
Again I emphasize that I'm open to learning. But if people see Paul as hypocritical, that's worth airing out.
Thanks again for commenting. I don't get enough of 'em. :)
Hey Dan,
ReplyDeleteTo follow Dave's spoint, what's this use of the passive voice: "is widely seen"? If someone has this view, they should say it directly. And if you want to repeat it, you should give the source, if not by name, at least by affiliation.
Published on: www.beforeyoutakethatpill.com
ReplyDeleteThe Prevention Of Ignorance
Historically, information sources provided to American citizens were limited due to the few methods available to the public, such as radio, TV, or news print. And also this information was subject to being filtered and, in some cases, delayed. This occurred for a number of reasons, which included political ones.
Now, and with arguably great elation, there is the internet, which can be rather beneficial for the average citizen.
Soon after the advent of the internet well over a decade ago, web logs were created, that are now termed ‘blogs’. At that time the blogs were referred to as personal journals or diaries visible on line. As time passed, blogs became a media medium, and blog communities evolved into addressing topics that often were not often addressed in mainstream media, as they crossed previously existing political and social lines. In addition, blogs provide immediate contributions by others, the readers of the posts of the blog authors, instead of the cumbersomeness of opinion and editorial pieces historically and not always presented in such media forms as newspapers or magazines.
The authors of blogs vary as far as their backgrounds and intent of what they choose to address on their blogs exactly, just as with other media forms. Some are employed by the very media sources that existed before them. Furthermore, they are not exonerated from the legalities of what is written, such as cases of libel. While we can presume that bloggers like to write, they may not be quality writers, yet several are in fact journalists, as well as doctors and lawyers, for example. But to write is to think, which I believe is a good quality one should have. Regardless, a type of Socratic learning seems to be occurring due to the advent of blogs.
Yet presently, blogs have become quite a driving force for those with objectives and issues often opposed by others, and therefore have become a serious threat to others. These others may be politicians, our government, or corporations- all of which have been known to monitor the content of certain blogs of concern to them for their potential to negatively affect their image or their activities previously undisclosed. This is why blogs, on occasion, have become a media medium for whistleblowers, which will be addressed further in a moment.
While one disadvantage of blogs is the potential lack of reliability, blogs however do allow in addition to the comments of its readers the posting of authentic internal or confidential documents that typically are not created to be viewed by the public, yet are acquired by certain bloggers. For example, blogger Dr. Peter Rost, a whistleblower himself, not long ago posted a newsletter published by pharmaceutical company AstraZeneca on his blog site, and this newsletter was given to him by AstraZeneca's employees who called themselves the ‘AZ Group of Seven’- with the intent of this group being to bring to the attention of others the illegal activity of off-label promotion of one of AZ’s cancer drugs promoted by their employer. Yet this particular concern by AZ seven, by surprise, is not what caught the attention of so many who viewed the posted newsletter by Dr. Rost and was read with great interest by others. It was instead a comment included in this newsletter that was stated by former regional AZ manager Mike Zubalagga, who was being interviewed by a district manager in this newsletter. Mr. Zubalagga, who in this newsletter posted on Dr Rost's blog site, referred to doctors’ offices as ‘buckets of money’, which caught the attention of several readers. This and other statements by this man were in fact published in this newsletter clearly not reviewed before its publication. . Again, the statement and the newsletter created by AZ was indeed authentic and further validated due to the content being in the written word, which added credibility.
Mr. Zubalagga was fired the next day due to this ‘buckets of money’ comment due to the effect it had on the image of his employer. His manager resigned soon afterwards from AZ.
Blogs, one can safely conclude, reveal secrets.
And there have been other whistleblower cases on various blogs in addition to this one described a moment ago, which illustrates the power of blogs as being a very powerful and threatening media medium of valid information disclosure that others cannot prevent from occurring.
This, in my opinion, is true freedom of information- largely free of embellishments or selective omissions. It’s a step towards communication utopia, perhaps, yet a force that has the ability to both harm and protect many others.
Yet again, the information on these blogs should not be taken as absolute truth without proof to verify claims that may be made, as with other media sources. Of course, documents that are authentic is an example of a good validation source. And this, in my opinion, is the blog’s greatest value, combined with the comments on blogs from the growing number of readers who are allowed to contribute to the subject matter so quickly, which fuels the objectives of the blogs, which may be a type of Socratic learning.
Like other written statements, some on such internet sites are composed with respect of the written word. Others are not. It's the freedom that may be most appealing of this new medium which has the ability to convert citizens into journalists who want to contribute to an issue of their concern they share with the blogger often with great conviction and accuracy.
Because we, the public, have a right to know what we are entitled to know and what we want to know. This is especially true if the information disclosed on blogs could potentially be adverse to our well-being.
Ignorance is bliss, but knowledge is power.
“Information is the seed of an idea, and only grows when it’s watered.” --- Heinz V. Berger
Dan Abshear