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Thursday, July 26, 2012

Media and the Message


Regina. 

That is my name.  I have known why it is my name since I was a small child.  It is etched within my mind beside my childhood prayer: “Now I lay me down to sleep, I pray thee Lord, My soul to keep.  If I should die before I wake… “

I am named after my great Aunt Regina Roggow.  She died in 1906 when she was only 5 years old.  She shares a grave with her little brother Erwin who was only three.  They died of Scarlett Fever.  If you are parent, you might have gotten those little slips of paper that warn of an instance of strep throat in the classroom.  After getting the note you probably watched your child more closely and perhaps made a trip to your local doctor to pick up some antibiotics. 

My great grandparents did not pick up antibiotics; there were none to be had, instead they picked out a headstone. 

When I was a child, I would visit this small grave on the wind swept prairie of Oklahoma.  I would grasp plastic grave flowers in my pudgy fist.  I would step carefully through stickers and cockleburs that would catch upon my ankle socks.  I would walk towards the back of the cemetery to the children’s section.  I want you to think about that.  The children’s section.  So many children died back then they had their own space.  Here the tombstones were smaller and often depicted lambs.  I would kneel at Regina’s grave and press the flower deep into the red dirt.  I would cry for a child I had never met.

When began I visiting Regina’s grave she had already been dead for over 70 years.  It was hard to read her name on the weathered granite.  I would trace the indentations with my little finger.  The years passed. I grew and Regina’s name faded.  Recently my Aunt Minnie asked the folks at Pellow Monument Works in Enid Oklahoma if they could do anything to improve the text on the grave monument. Aunt Minnie wanted the visitors to be able read the stone.  The Pellow team said they could.  The painted it with black lithochrome and then re-sanded the granite to its original tone.

Regina Roggow's grave

Now its message is crisp and clear. Regina has monument on the prairie in Oklahoma.  Now due to this post, she will have one online as well. 

When I speak, I speak for children like Regina and I speak for men like my late husband Fred Holliday.  I, like many who work within patient advocacy, want to make sure our loved ones did not die in vain.  We want the world to remember them, and through telling their stories effect great and positive change.

Sometimes due to our personal sorrow or anger our messages are not clear or can be off-putting.  Sometimes due to inexperience we will say things that are considered rude within the world of social media.

I am writing this post to address the etiquette and protocol within social media as it applies to advocates and the communities to which they post.

Advocating from sixth stage of grief.   You probably know about the five stages of grief: denial, anger, bargaining, depression and acceptance.  A good friend of mine named Trisha Torrey wrote about the sixth stage of grief calling it Proactive Survivorship.  Proactive survivors have gone through the five stages of grief and want to help others.  They still remember their sorrow and anger, but they do not let these emotions control their advocacy or cloud their message.  They have replaced blame with hope and their story is not tragedy; it is triumph.  These advocates are often the most effective.

Some advocates are still actively experiencing anger and depression.  It is hard for them to hear the joy and success of their counterparts.  Often these two groups will be at odds with each other.  Please take a deep breath when you post to other members of the social media community.  We all have experienced suffering; we all have a reason for being here.  We may just be at different stages of the journey.

The smiley face is your friend.  In tweets or in facebook comments there is not a lot of time for nuance.  If you say something quickly and think it can be taken in a negative way the simple emoticon J can do much to eliminate ruffled feathers.

Don’t spam your friends. When you have a new link or post that you are excited about do not cut and paste it repeatedly in every forum or group.  Sometimes the post is of extreme importance with a limited window of action ie; public comment period is almost over, tweetchat is tonight or a reporter is looking for content relevant to a dead lining story. We will understand a deluge then.  Rather than over-posting, posting it where it is most appropriate, then tailoring your message to the group will help with spread.  If you become known as an advocate that spams multiple groups with the same post, your messages may become synonymous to white noise and disregarded.

Everything in Moderation. Do not attack a advocate personally for their thoughts on a subject.  We are all working toward a common cause of improving the patient experience. Try to be civil in your debate.  If you are concerned about comments directed to you in a public forum, contact the poster privately if possible.  If that is not possible, contact the moderator or admin.  They can remove inappropriate comments.  Know that certain types of comments can result in an advocate being blocked from a site.  It is important that list serves and facebook groups be safe places where people feel comfortable speaking truthfully and with respect.  Group membership will decline if the space feels like the Wild West.  I have seen too many groups loose valuable membership because of poor self-moderation of comments.

Know your social media platform

Twitter is a caused based platform.  In twitter we use hastags: #hcsm (healthcare social media) or #ptsafety(patient safety) to follow concepts or chat sessions.  This is usually done in a very public way and most accounts are open.  The stream of comments can be searched through google and those who tweet should know that their writing could be seen by anyone.  On twitter you can follow people who do not follow you back.  You can comment to them directly by posting in the public stream.  If you wish to say something privately you can send them a direct message if they can follow you back.  Direct messages are like short private emails between two people.

Facebook is a wonderful tool for finding people.  This platform is more closed.  I have never been able to find a facebook comment during a google search, though I can find the person and their interests.  In facebook, you can communicate by including a friend’s name within your post and it will appear publically on your wall as well as their own.  This is a good tool if you know this person well and know the message is very much inline with their life and mission.  If you think it might not reflect their worldview it is not considered appropriate to post it on their wall.  If you wish to say something privately a facebook message is used.  A message can be between two or more individuals but is not a public form of communication.  Copying the text contained in a message and sharing it without permission is considered a breach of trust.  Please always ask permission before sharing private messages with other people.

Your blog is your voice.  The blog is an amazing tool.  Here your can explain your stance in patient advocacy in great detail.  Unlike a website, it is rarely static and very easy to update.  You can post links to your blog on both twitter and facebook.  A lot of misunderstanding occurs online when you do not have the space to explain yourself in full.  A blog can give you the time and space to be clear and if you enable comments you will get questions directly.  Enabling comments will also help you to understand the hard job of moderating comments, a challenge that facebook administrators are well aware of.  Empathy is a good and valid teacher.

Writing in all capitols in twitter or Facebook is perceived as screaming or yelling in this space.  If you served in the military you may have written in all caps for clarity, but online this can be very off-putting.  It often reflects badly upon the person who posts in such a way.  There are many who will not read what you have to say when you do this, so do it rarely, choosing a word or two for special emphasis.


It may be called SoMe, but it is really about us!  In social media it is crucial to listen and share.  Talking and posting is important, but this relationship works because of give and take.   It can be very off-putting to other advocates if we post constantly about our own cause without focusing on and sharing the content of other speakers in this space.  It is very important to network our messages with other advocates, providers and thought leaders.  Look at the places you comment.  If you are constantly redirecting everyone to your own site and campaign, you are monopolizing the conversation. 

You are creating a monument to those you loved.   Remember all that you say in the world of Social Media reflects back on you.  It reflects back on your loved ones as well.   There are often times I wish to “blow a gasket” in this space.  And as you well know, I have, but this too with moderation.  Do not become a flamer, for flames breed fire and fire consumes all. 

When I die, I would like my body to be donated to science or burned.  I do not want a gravestone. If my family or friends wish to visit a grave they should visit little Regina Roggow’s grave.   She died too soon and I hope in some small way I have lived for her.  The only monument I will ever need is already being inscribed. It is crowd sourced and is the product of social media.  You can find it in the google search field by typing Regina Holliday artist.

Remember when you post online you too are building your monument or marker in this mortal coil, do so honestly and with dignity.

These were just a few thoughts upon this subject.  I am a big believer in crowd sourcing so please feel free to comment in the comment field to further expound upon protocol in patient advocate social media.

24 comments:

  1. Holy cow! What a masterpiece of social media etiquette!

    And not just the specifics, but the context: the monument. So well said.

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    1. Thank you Dave. I thought if framed this way people would realize how very important it is.

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    2. perfectly said, Dave. Perfectly said, Regina. This should be on every FAQ page about social media. Thanks.

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  2. A beatiful testament for everyone -- those in the patient community and the rest of us, who someday will be.

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    1. Nancy, I miss you. We must get together soon. You always have such a good grasp of the current situation in patient centered care.

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  3. One day I came across an old Life magazine from the 60s about the large number of abortions women who had been exposed to measles epidemic were having. I remember being so thankful when the first vaccine against measles was added to my babies immunization shots because I knew children born with disabilities due to prenatal exposure. How quickly we have forgotten.

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    1. Yes, we often forget how much we have been blessed by modern medicine. As work to decrease harm we should still rejoice in all of the good that has come from it.

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  4. LOVE the SoMe meme - ' cause it really is *so* US. Great anchor, too, in that beautifully restored monument to Regina 1.0.

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    1. Isn't it a lovely monument? It made me smile to see it so crisp and clear. It does help us remember that all of this is so us.

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    2. It is so crisp and clear! In the summertime, as a child, I would sometimes help my grandmother clean a family plot of graves -- many, many children from the 19th century. My grandmother talked about the fevers which took some, the lack of refrigeration and medicines available. Some stones were smooth and had just the child's initials. My favorite was a beautifully carved stone for a little girl named "Henrietta."

      Your post's words reminded me of this essay by Anil Dash:
      http://dashes.com/anil/2011/07/if-your-websites-full-of-assholes-its-your-fault.html

      When I went back to find it again to highlight here I was surprised to see that he also chose to illustrate his post with a graveyard photo. It's worth a read, for another illumination of online etiquette (in coarser language than you'd use, Regina :)

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    3. Susannah, I am glad to hear we share such memories. I was often cleaning the plots with my Aunts and had my little sister in tow, we took would marvel at the beauty of the stones and pick our "favorite ones."

      I really liked the post your linked within your comment. His language is as colorful as one of my paintings, but he is making the same point. I find it quite interesting that we both used gravestones as our image and you connected both within your mind.

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  5. Regina your articulate clarity is a beacon.

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    1. Bart, God has given us all so many strengths. It is his light that shines through this beacon. Let us hope and pray we can help others reach a sense of fulfillment and peace.

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  6. Where to start...so moved by the topic, but lead by the imagery. A painting of words! Lessons for all, especially those entering in the sensitive world of patient advocacy.

    As a little girl, I moved around a lot. I would find an old cemetery when we settled into a new home and visit the "children's section" of what were then my peers, because I thought they needed friends, too. Thank you for sharing, enjoying this world of new friends in SoMe and that we can "listen & share" ;)

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    1. Painting with words is just as nice as with my paint brushes :)

      I think you have said something very profound in your search for your graveyard "peers." In the world of patient advocacy we too are on a search for our peers, while carefully stepping among the dead and trying to avoid the cockle-burs along the way.

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  7. Thank you so much for saying this.

    I'd like to respectfully add one more guideline. Praise in public; criticize in private.

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    1. Interesting - as this is the second time I've seen this lately. I disagree. Critique is not criticism, and overall criticism is a real part of life. We can't walk around agreeing with one another all the time. It's false, and consequently I find perpetually sunny personalities off-putting. Fred Trotter taught me a hard lesson in this regard. His comments on an issue and a piece of my writing cut to the quick - but I learned a valuable lesson, and ultimately what Fred said what right. We should never be hateful or purposefully hurtful with our critique and criticism, but we should be honest with the intent of furthering the dialogue and getting to the heart of the matter.

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  8. Remarkable. Thank you so much!

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  9. Oops, screwed up the "comment as" ....trying again.

    Gives me another opportunity to thank you, Regina!

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  10. Eloquent, perfect, true. Thank you for reminding us all and for level-setting our responsibility to each other.

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  11. thank you. I have not heard the term, the 6th stage of grief. It feels so true. It is also a good term to remind myself why I am doing what ever it is that might be difficult in the moment.

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  12. Well said - brava! I think it is so important to be careful not to judge others. There were times, going through the 5 stages of grief, when I felt judged - judged for my motives, my behavior, my emotions, what I said, what I didn't say, etc. The truth is that none of us can presume to know someone else's burden or tell them how they're "supposed" to react.

    I honestly wish your post could be widely shared in the health provider community. I think many of them still have trouble talking to patients and families. They are easily put off or threatened by the emotions and often don't understand that the anger, the grief, the mistrust and all the rest of it are simply part of the package and that the best thing they can do is be with us while we work it out together.

    I have actually seen clinicians request that a patient or family member be blocked from an online forum. Yes, sometimes it is uncomfortable to hear what we have to say. Yes, sometimes the rawness of the emotions makes us express ourselves in ways that aren't always constructive. But when providers don't want to engage because it's uncomfortable, the message they're unwittingly sending is that it's really all about them. We don't achieve the change we wish to see when the fundamental respect for the patient and family experience isn't really there. The goal should be mutual understanding and respecting what each of us knows.

    Thank you for listening, and god bless.

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