The power of the Hive Mind

Did you know the US Secretary of the Department of Health and Human Services Mike Levitt started blogging? I want to speak in favor of nephrologist, nurses, and other renal professionals posting online. Dori and Beth can you speak to why you decided to participate under your real name? Are there professional consequences? Are there rules you’ve learned over the years about what to write and what not to write? What are the upsides and downsides?

Rich what was your calculus to decide to post under your real name? Pat? Gus? Everyone else?I know other professionals look in on this board , others have jumped in e.g. Jim Curtis has the highest post count but Dr. Allan Hull’s response to NephNurse stands out as a taste of what could be but alas that one post did not lead to an ongoing discussion.

I just think if a US Cabinet Secretary can blog we ought to be able to create an environment where professionals can interact. What would have to happen? A hive mind is a powerful tool. How can we create a renal hive mind?

Bill, I’ve lived my whole life as an open book. I think it’s something Iearned from my father who I believe was the most honest person I’ve ever known. So I guess I learned those lessons from him and have lived my 60 years in that fashion. Any words that come from my mouth or my pen come with my real name. I just don’t believe in being anonymous. I just believe if my words and views are going to mean anything and if I’m going to have any credibility then it has to come from me.

Bill,
From the time I was a little girl, my mom who was very involved in politics, and unions, taught me to be myself. Always tell the truth, and be open and above board.
I do not have anything to hide. If I say something and someone can prove other wise I always appoligise. No one is perfect all of the time. Only GOD!
I just feel to be open and use my real name maked me more of a “person” not just a sign on. I think that when someone uses their real name on these sights that may have a “little” more impact. I could be wrong. But I enjoy seeing peoples names and knowing where they live.
This is just my opinion.
Pat

Hi Bill,

I can’t speak for Beth, but since the MEI started this site, it would be a little silly for me to pretend to be someone other than I am when I post. Frankly, it actually never occurred to me to do that. We leave open the possibility for folks to be anonymous if they choose, even though for a while (until we got this message board software that Gus recommended) that decision meant dealing on a daily basis with reams of spam. Why? Because, while most of my beliefs about home dialysis and the overall system of care are known to the renal community through lots of presentations and published articles, some folks may not have that same freedom to speak out. Blogging can be a bit of a risk–certainly some folks (staffers, if I recall), have lost their jobs over posting inappropriate content or company held information. In the renal community, it seems that every year some company is cited for something or other. So, someone might well have something to lose. But not us.

Like every non-profit organization, the MEI operates in service of a mission–in our case, to help people with chronic disease learn to manage and improve their health through research, evidence-based education, and outreach (and to help professionals support patients in their self-management efforts). Every project that we take on, every talk we give, committee we serve on, article we write, research study we conduct or coordinate, and website we operate must help to further our mission. This means we are always sending a consistent message, because everything we do is toward a single purpose. Everything I post in these boards is, too. So, there’s no reason to hide it.

On a personal level, I think Shakespeare was exactly right when he had Polonius tell his son (in Hamlet), “To thine own self be true, and it will follow as the the night the day, thou canst’ not then be false to any man.” It takes less psychic energy to be yourself all the time, in every situation–and you can then use that energy to move forward toward your goals. :smiley:

OK Bill, we volunteered! What about you?

[quote=Bill Peckham;14422]Did you know the US Secretary of the Department of Health and Human Services Mike Levitt started blogging? I want to speak in favor of nephrologist, nurses, and other renal professionals posting online. Dori and Beth can you speak to why you decided to participate under your real name? Are there professional consequences? Are there rules you’ve learned over the years about what to write and what not to write? What are the upsides and downsides?

Rich what was your calculus to decide to post under your real name? Pat? Gus? Everyone else?I know other professionals look in on this board , others have jumped in e.g. Jim Curtis has the highest post count but Dr. Allan Hull’s response to NephNurse stands out as a taste of what could be but alas that one post did not lead to an ongoing discussion.

I just think if a US Cabinet Secretary can blog we ought to be able to create an environment where professionals can interact. What would have to happen? A hive mind is a powerful tool. How can we create a renal hive mind?[/quote]

Sorry for late reply, my PC and net taken away! LOL, hehehe…well, my home dialysis room is being relocated to a new room and what not, may not have net access maybe for 3 days…

Anyway, from the very first first days of home dialysis immediately I registered here and I knew that GOD wanted me to assist people who are just starting out. First timers really need our help, espcially them, so as you can see you need to expose who you are, no matter! The question is, “How can you open the doors wider and tell people, yes its okay!” ?..

If you look at my blogging site, back then I can maybe say was the firs(on Youtube.com)t to show the world my private home dialysis room with myself putting needles on!(I credit Bill Peckham…his stories/videos gave me the push)…now take a look at Adam, another brave soul!

However, for an open message board for professionals to post freely is quite difficult…though they still lurk and the reason for that is they need to read from us patients our thoughts and opinions, it helps them become better Doctors…as Dori stated the conseqences for professionals are higher than those of us patients. It is risky, no matter what…on the other hand us as patients hearing from Professionals like Dori, Beth, and Dr. Agar is quite important too! I think thats changing now, like Mike Leavitt’s blog many more politicians also have their blogs as well…nearly most of them! [B]With Youtube.com they’re all heading towards videos!

[/B]I think we’re headed towards a good change, but still there’s so much work to do and I think that work should be focused more online.

I just didn’t see the point of maintaining an alias. I also post about renal politics and such where one’s conflict of interests should be laid out if you want maximum credibility. I have a unique point of view which would be less credible if I used an alias. In general it seems as a dialyzor if you take a dime from one of the renal industry entities your credibility comes under question and since my connection to the renal industry is as a volunteer I don’t have that problem.

I also think that I am in a unique position that other dialyzors will likely never experience. As the trustee board Chair of a well established provider I have a point of view that is unusual and I feel obliged to try and share what I know - for what it is worth. It does mean that I know things that I can not post about but my point of view is informed by my volunteer work and I think that comes through.

The main problem that I have is that keeping up takes a huge amount of time and I don’t keep up with just the dialysis boards - I have other interests that also could fill hours and hours of internet time. Sometimes it can all be a bit much because in addition to online communication I get numerous emails connected to the volunteer commitments I have (plus the random emails from dialyzors - either wanting travel info, home dialysis info or just starting dialysis and freaking out info) and I also have work that really gets in the way. I work hourly through the union - if I take time off to volunteer in some way - participate in conference calls, attend meetings, write posts - then I am doing it on my own time, which has to be in addition to work (and sleeping, eating , doing laundry, exercising the dog, etc.). It’s a challenge. I’ve basically taken this month off trying to figure out a way I could not work 30 hours a week but it looks like I’ll be back on the clock on Tuesday.

So I see a conundrum - as a volunteer my opinion is valued but it’s hard being a full time volunteer so I feel kinda stuck. I just think that if a Cabinet Secretary can blog the experts I get to talk to through my volunteer activities should also feel like online communication is an option. Ultimately including more dialyzors in the communication would get dialyzors more involved which is something that I think would benefit the provision of dialysis. I see the goal of additional communication being more involved dialyzors.

Dori maybe if you hosted straight blogs from HDC sponsors they would be more comfortable. A blog can be posted and then the commenters can take over - reviewing Dr. Hull’s post or the thread after his post - it seemed to devolve and I can see that getting in a back and forth with 20 different people would be sub-optimal. There must be a way that would be of benefit to all parties.

Bill, if any of our sponsors wanted to blog somewhere that we could follow and comment on it, we’d certainly be open to that. Nobody’s knocked on our door offering to do that yet, but maybe you just gave them the idea? I guess we’ll see…

Dori, I think you and Beth can really give the push and encouragement by making some online video presentation showing both of you speaking about home dialysis? Something to show Professionals and let them know, “Yes, its okay…” after all, both of you are Professionals…and even maybe posting these videos around popular video sites like Youtube and Google…

Also, on another note…Vbulletin has updated to now support blogging!! Yes, that means every registered user can now create their own blog, all inside Vbulletin. Checkout an example here.

Hi Folks

What in the He"" is a hive mind? Are you guys talking about group think? I don’t care if people use a screen name or real name just a name so we who are open and honest can see and tell who gives good information and who just want start flame wars.

I always check out things from other places anyway. Don’t count on one source!!!
bobeleanor

Hive mind : a single consciousness occupying many bodies

or to put it another way the idea that the sum is greater than the parts. We and many, many other people want the same thing - optimal renal replacement - by sharing ideas on how to reach that goal we can create a body of knowledge greater than any one individual.

I’m not suggesting we’d be better off as Borg- I’m saying we’d be better off with more diverse participation.

Hi Folks

Oh Bill you crack me up.

In theory , at least most people who work in dialysis ( maybe not the techs), but drs, nurses , soc. workers. and the person on dialysis should be looking or would want to find a better way and would be working in some way towards that in one way or another.

Smaller machines , kidneys that might be cloned from the person if the person is a likely to have kidney problems. We can hope that in 10 or more years some of these things can be real and not just dreams.

Bob O’Brien

Bill, I still don’t understand how your def of Hive Mind relates to usage of real names? Perhaps we should leave this for Sarkis’s, where philosphical discussions mix with great omelets. For those not familiar, and that means almost everybody, Sarkis is a little greasy-spoon cafe where Bill and I usually eat when he’s in town. There might even be a connection with this place and kidney failure, and if so then it might have been worth it.

[quote=Rich Berkowitz;14450]Bill, I still don’t understand how your def of Hive Mind relates to usage of real names? [/quote] For dialyzors an alias is fine so long as it is used with each post - over time we get to know a person and their situation. For the renal professionals I think the power of their participation comes from knowing who is doing the posting. Dr. Agar signed his first post which is equivalent to having his name as a user name, we all know who nocturnaldialysis is so it is the same. If I post somewhere as billp or some such alias then I sign the first post and leave it there. NepNurse’s posts are an example of unsigned posts having less credibility then if the post had be signed. I can guess who NephNurse was but certainly Dr. Hull had more credibility in the discussion because he signed his post.

I imagine a hive mind as a the cyber equivalent of the salonof an earlier day. Imagine if we all lived in the same community - we would likely meet at least once a week (perhaps at Sarkis’s or somewhere with more seating). Of course since we are scattered across the globe the only way we could come together is online. It looks like Nephrology News & Issues is putting a toe into the blogisphere - I do believe this is the direction communication is going.

The political blogs are the most evolved online - looking at them I think gives an idea where this is going and I think we should be excited about the future of communication.

Bill,

Don’t you want to know why I use my name?

I’ll tell you.

Using my name says to the world that I stand behind what I say. My name is a portal to my identity. People change the world, generally not anonymous people (though anonymous benefactors are often appreciated). Real people with real names. Using my name provides legitamacy to my thoughts.

Glad you asked.

Erich

I am not sure I understand the real intention behind this post, but Bill seems to be saying wouldn’t it be nice if everyone could use their real names and patients and staff and everyone concerned could communicate for the sake of improving dialysis care. Please correct me if I’m wrong.

For those who proudly use their real names online, do you do so while at risk for your life? Because I have been in a number of units and have heard the testimonials of countless dialysis patients, and staff, and the unspoken word is don’t ever give your name or discuss unit improprieties- you might very well be ostracized or kicked out!That means a job for staff and one’s life if one is a patient unless one has the means to hire an attorney and the ability to relocate to another clinic.

For those who are so proud because you use your real name, have you ever stopped to think that many of your fellow patients have been raped of using theirs? Why in the world would using ones real name even be an issue unless there was real, or perceived, consequences for doing so?

I’ve said it before and I’ll say it again- until the day comes when there are federal and state protections against “dumping” patients, or staff , who speak their views, real communication/progress for dialysis care will be hindered. It is absurd that everyone can not freely communicate whether it be at the unit or on a kidney board. Let’s see, what year is this…2007 or the Dark Ages…not much has changed.