2013: In the Rearview Mirror

Our Family

This was a great year.  On the home front, I began the home school process with eldest son Freddie.  Younger son Isaac continues to thrive in public school. He is now a proud 2^nd grader.

We moved in June to Grantville, MD population 700.   This is the town my husband Fred called home throughout his childhood.  Often our older neighbors mistake my son Isaac for the child that was Fred.  Moving was a big change after living in DC for 16 years.  Grantsville is much calmer and a better home for my active sons.  Also, we now live in the same town as my in-laws and Fred’s grave is only blocks away. 

I now belong to the local Rotary Club and volunteer at the HighlandThrift Shop.  Isaac is in Cub Scouts and we are making new friends.  This area is awash with fundraising and good causes and I am honored to take part in such worthy endeavors.

Our Church

Our family joined Christ Lutheran Church in Grantsville this fall.  It is a lovely small Church with a dedicated congregation.   Pastor Ingrid and I went door-to-door twice inviting folks to our Church.  (I love people who are brave and go along with my evangelism ideas.  Pastor Ingrid is such a wonderful servant of the Lord and leader of our congregation.)   Two new families are now attending and have decided to be baptized in the faith.  I hope for them the joy I have felt walking with the Holy Spirit in my heart.

My Car

For the first time in my 41 years on this earth I have a driver’s license.   I took the driver’s test 4 times in the State of Maryland before I passed the test.  (I took it twice in Oklahoma in 1991, so that adds up to 6 times)  Some people in my life seem to think I am good at all I do.  This goes to show I am not. I just didn’t give up.  That is really important lesson in a life.

Thank you For the Opportunity to Speak

I look back on an amazing year filled with advocacy.  I spoke, painted and wrote about health in this nation and beyond its borders. I met so very many wonderful people and look forward to working with them again.

I had the honor to speak, paint, blog and tweet at so many wonderful places in 2013.  I thank all of the organizations and venues that gave me opportunity to spread the message of patient inclusion at the policy table and the importance of medical advocacy.  I especially thank Brenda Kane and her associates at the American Program Bureau for her diligent efforts to help me speak at ever more venues.

Thank you…

Saskatchewan Academic Health Sciences Network, Saskatoon, SK, Canada. 

4^th Annual Workshop on Health IT and Economics (WHITE 2013) Washington,

“Patient at the Center of Clinical Trials.” Roundtable at Lilly, Indianapolis, Indiana

Midwest Care Alliance, Columbus, Ohio

MetaStar Event, Madison, Wisconsin

St. Joseph’s Hospital, Bangor, Maine

Planetree Annual Conference 2013, Montreal, Quebec, Canada

Annual Cerner Health Conference, Kansas City, Missouri

Health 2.0 San Francisco, California

Stanford Medicine X, Stanford, California

Southeastern Michigan Health Information Management Association Annual Meeting, Detroit, Michigan

2013 AHIMA Health Integrity Summit, Alexandria, Virginia

KUMC, Kansas City, Kansas

Grand Rounds Halifax Health, Daytona, Florida

Iowa Healthcare Collaborative (IHC), Altoona, Iowa

The 32^nd Annual Colorado Health Symposium, Keystone, Colorado

Merge Live User Group Conference, Chicago, Illinois

Academy Health’s Innovation Station at ARM, Baltimore, Maryland

Mississippi Calling: Healthcare Symposium- ePatient Literacy, Jackson, Mississippi

Collaboration Across Borders, Vancouver, Canada

Walking Gallery III at St. Paul’s Lutheran Church and rededication of the mural 73 cents.

Genetic Alliance and Intermountain, Powerful Patient Data: Genomics and Family Health History in Health IT, Salt Lake City Utah

Kaiser Permanente Innovation Retreat, Denver, Colorado

California HIE Stakeholder Summit, Sacramento, California 

“The Role of Patient Engagement:  Diverse Perspectives from Our Panel of Experts” for The Children’s Hospital of Philadelphia’s, Center for Biomedical Informatics’ Annual Healthcare Informatics Symposium, Philadelphia, Pennsylvania

Medseek Conference, Austin, Texas  

Screening of 73 Cents and Q&A in Austin, Texas

NCAL HIMSS Chapter on Patient Engagement, Fairfield, California

ACMA (American Case Managers Association), San Diego, California

Genentech Meeting, San Francisco, California

HDX Conference, Boston, Massachusetts

Third Annual Crossing the Infrastructure & HITECH Meaningful Divide Symposium….”“The Patient and Technology:  Partners in Care,” King of Prussia, Pennsylvania

Maine Association for Healthcare Quality, Bangor Maine

Patient Safety Awareness Week, Calais, Maine

Our City Film Festival, Washington DC

Expectations: University Hospitals Case Medical Center has a Quality and Patient Safety Fair, Cleveland, Ohio

Artist onsite HIMSS Patient Experience with HIT, New Orleans, Louisiana

JHU/NHGRI Genetic Counseling Training Program at NIH, Rockville, MD

The Walking Gallery

We had a successful crowd fund earlier this year on Medstartr with the help of Cancer 101, raising $10,000.00 to pay for a mini documentary of the Walking Gallery.  The documentary is posted online and free to share.  Please share widely as it is a good way to explain the movement.  

The Walking Gallery of Healthcare from Eidolon Films on Vimeo.

The Walking Gallery now has 269 walkers who wear their jackets around the world.  There are 23 artists who have painted in the Gallery; seven new ones joined us in 2013.

We now number 300 jackets.  That is a mighty number.

The last jacket painted in 2013 is entitled “The Rolodex.”  I painted it for Cathy Collet who is better know as @ALSadvocacy on twitter.

As I was designing this jacket, Colton (our family friend and 4^th grade pupil) asked what was the thing that I was painting.  I told him it was a Rolodex.  He asked, “What is a Rolodex?”  I smiled at this small digital native and explained before computers we kept our business contacts, friends and family’s information in these handy devices. 

As I explained the concept of a Rolodex, I thought of the many years that I would spend the quiet days between Christmas and New Year’ cleaning out old cards and making room for new ones.  I would pull card after card of sales reps who had moved away, friends whose Christmas cards came back “return to sender” and the cards of friends and family who had died. 

I looked at Colton and explained everyone in the Rolodex I was painting died as result of ALS.  He asked me what was ALS.  I explained it was a disease that made it hard to use your muscles.   First walking would be hard to do, then using your hands and then talking.   As the disease continued a patient would talk using their eyes, then finally they would not be able to breathe.  They would descend into the complete silence in the end.

Colton said, “That sounds like a hard way to die.”  I told him we could do something special for these people we lost.  We could tell their story.

I told Colton, “After Fred died I Googled him.  He had only two hits.  One was from the obituary in the paper and one was from American University where he worked.  Then I spent the last 4 years on medical advocacy and speaking about Fred.  Would you like to see how many hits Fred has now?”

Colton nodded yes and his eyes grew big as he looked at the result: Frederick Holliday II PhD had over 6 million hits. 

Online the names from a Rolodex live on.  We get to meet Cathy’s friends and family; Barbara Brenner, Betty Collet, Pat Dwyer, Ben Harris, Scott Curtis Johnson and Rob Tison.  We see them leave the dusty card and walk into an eternity of advocacy.

That is my 2013 in the review mirror.  The things we did, the people we met will create ripples in the years to come.  We will never really finish this time in our lives nor truly say goodbye to those we love; this time continues in our hearts and within our digital lives.

Patients as Brand, Advocates

I love earPlanes.

Do you know what I am talking about?  earPlanes are these little earplugs that were created by Cirrus Healthcare products to reduce ear pain when flying.  The device consists of a silicone earplug and a ceramic pressure regulator.  As a frequent flyer, I use them on every flight. They cost $8.00 a pair and are worth every penny.

Before I found out about these nifty little things, I was suffering frequent ear infections post flight and could not hear very well due to ears that would not “pop” for days.  This was quite a problem.  It is hard to speak well if you cannot hear well.  Also as a person with high co-pays and no prescription coverage treating the subsequent ear infections was getting to be quite expensive.

I posted my problem on Facebook and one of my friends alerted me to the wonder that is earPlanes.  I admit I was somewhat disappointed that my doctor never suggested such an affordable preventive option.  (By that point I already spent over 500 dollars on my air flight-induced ear infections.)  Perhaps she did not know about this option, so I am blogging about it in the hope that fellow travelers can have a less painful journey.

If you read the above paragraphs you might realize why I am writing about Earplanes is not to help Cirrus Healthcare Products.  I want to help my friends and fellow travelers.  You might also realize there were two brands enclosed in the above testiomony: Earplanes/Cirrus Healthcare Products and Regina Holliday.

This post on the meaning of branding was inspired by a cold call request made by Andrew  from PM360 Magazine.

“I am with PM360 Magazine, a monthly publication for pharma marketers. We also send out a monthly e-newsletter called Panorama. Every month in the newsletter we ask our readers a questions about a new topic, and then we publish the responses we receive in an article in the next month's edition. I thought that this topic might interest you as a patient advocate.

Trend Talk: Patients as Brand Advocates?

Social media has created a web of readily available brand advocates. For the most part, these are just regular people who are talking about the stuff they like and in doing so are influencing their social circle to also purchase that product. Now, new companies are emerging that are attempting to measure a person’s influence on social media. These companies, such as Klout and PeerIndex, do not only analyze a person’s influence and give them a score, but they work with brands to help them promote their products. For instance, high influencers can be given a discount on a new product or just given a sample to try out. Then it is up to them if they want to tweet or post about it—obviously the brand hopes they like it enough to recommend it. While this model may work for consumer packaged goods companies, is there any way pharma could take advantage of this kind of data and do something similar? What is the best way that pharma marketers can work with patients to improve their campaigns? What are some of the most unique or interesting ways that you have seen pharma companies work with patients to help get their message out there? Email your responses… by May 14.

For the most part, we are only looking for a few sentences from each contributor. I thought you may want to contribute something from the patient's point of view. Let me know if you have anything to say on this topic and are interested in responding.

Thanks,

Andrew”

This request bothered me in its tone and scope, so I thought I would respond online and invite all my patient advocate friends to respond as well…

Do social media much?  The tone of this request is very off if you follow the ins and outs of social media.  Klout and PeerIndex were launched almost 4 years ago and that is rather ancient on the internet.  Also, I have never seen anyone in my social network utilize Klout  “perks:” the commercial tie-ins to brands.  I checked out PM360’s internet presence and it is a little sparse for a marketing magazine.  They have 134 connections on LinkedIn, 65 page likes on Facebook and on Twitter they have 1,553 followers.  I think some of the questionable tone of this request is due to inexperience in Social Media and too much exposure to the traditional group-think in marketing.

“While this model may work for consumer packaged goods companies, is there any way pharma could take advantage of this kind of data and do something similar?”

A word of advice: Don’t ever ask a patient activist how you can take advantage in the realm of patients…

“What is the best way that pharma marketers can work with patients to improve their campaigns?”

 Most patients in the social media space were just regular people who began to speak out.  In many cases they did that out of pain.  Just as a cattle’s brand is seared upon his flesh, the patient’s brand is seared upon their soul.  The patient may brand themselves with their formal name: Regina Holliday, a modification of said name: e-PatientDave, a created name: Afternoon Napper or the name of the organization they have created: Colontown.  They complete this painful process to spread their message be it focused on patient data access, patient empowerment or disease specific research and funding.

So the primary brand in such discussions is the brand of self and those in marketing are interested in tagging along for the ride.  Well, before you join my crazy life ride; I need to know something about you.  I may sing the praises of earPlanes without ever meeting anyone from Cirrus Healthcare (10 followers on Twitter) based on satisfaction of the product.  But I bet I would be even more appreciative if I was able to engage in active discussion with Cirrus staff who shared on Twitter.  We like to thank folks personally for the good work they have done.  When we work on campaigns in social media we expect the support to be like a friendship: it goes both ways.

“What are some of the most unique or interesting ways that you have seen pharma companies work with patients to help get their message out there?”

If you want to see a good example of pharma social media look at Lilly Clinical Open Innovation or @Lilly_COI on twitter.  They talk with us.  They attend our tweetchats. They even wished me Happy Birthday through a retweet last week.  @Lilly_COI may not have a ton of followers, but they understand social media is not about using patients.  Social media is about working with people. 

The folks @Lilly_COI have done a great job at helping patients get the patient message out.  They attended and helped sponsor The Partnership With Patients Summit in Kansas City last fall and even hosted an unconference session on clinical trials and patient experience.  They actively retweeted what patients had to say and helped the conference hashtag trend on Twitter.   That is what you meant by “to help get their message out there?” Correct, Andrew?  You wanted to know how pharma could help get the patient's message out? 

Well, those are my thoughts, but I would love for folks to respond to Andrew in the comments section of this blog or on the PM360 twitter account. 

*********************************************************************************
Update: Andrew wrote this response piece: Learning a Lesson from Patient Advocates

Thank you Andrew for joining the conversation!

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.

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.

Trisha's Calling

In the week before the gallery gathered in Washington, DC on June 4, 2012, we walked online.  A suggestion bubbled up on the twitter feed that walkers change his or her avatar to their jacket image.  It was a great idea, as many of those who live far away cannot make it to the physical gathering.   I was a beautiful thing to watch then twitter screen fill with icon art as the gallery neared.  So many pictures, in so little space scrolled before my eyes during that time.  One avatar stood out in particular.  That was Trisha Torrey’s image; she left the world of the functional icon behind and entered the world of the sacred.   She laughed at me when I said her picture looked holy.  After all, I had painted the image; I knew exactly what it looked like.  Except, I did not know. You see, Trisha cropped off the red boarder of her jacket when she posted the image.  That changed the tones of the blues within the piece, and their intensity was less without the reflected glory of the red. Those blues had become silver and her jacket had become an Icon.

This is Trisha Torrey’s Jacket: “Every Patient’s Advocate.” 

This was the second time I painted Trisha and I doubt it will be the last.  She first appeared in all of her cheery goodness in the painting “Give Us Our DamnedData.”  She is an unusual member of the justice league of patient advocates.  Like many in this space she joined us due to a medical error.  But her case is rather unusual.  She did not have cancer.  She was misdiagnosed with a very aggressive and deadly form of cancer and urged to begin a toxic treatment immediately.  Trisha sought a second opinion of another oncologist because she felt fine and trusted her body more than the orders she had being given.  She got a copy of her lab results and the questions began to pile up as she researched the terms and words included in the report. 

Prior to her appointment with the new doctor, she was pretty sure she did not have cancer. The new doctor confirmed it.  Now this is the place in the story many folks would walk away.  Perhaps this would become fodder for future conversations during book club or a great comment to post online in response to a cancer article.

Trisha took this experience and changed her life.  She created a bridge from her old life to a new one of advocacy.  She cannot forget that moment when she was told she had a fatal disease.  She cannot get back those weeks of worry she suffered.

Have you ever held your breath while crossing a bridge?  It is a game that many children play.  It is really fun game until the day you reach a long bridge. That day it stops being fun.  It stops being fun when your vision darkens a bit around the edges and that panicked gasp bursts forward from deep inside.  At this point a child might giggle, forgetting the terror of one moment before.  But Trisha does not forget the terror of that moment she could not breathe.

So Trisha writes and Trisha speaks.  Trisha questions many things and does so in a way that is not off-putting, yet is very much filled with authority.  In this painting she is the cloud and she is the embracing bridge.  Trisha connects people and she uses the tools of online advocacy to make this connections.  She does it through her writing at Every Patient’s Advocate and her patient and caregiver resource the AdvoConnection.   Within this image she is bringing people together, both providers and patients meeting in the middle.   

Above this vignette is Trisha’s face: sacred and serene doing what she must.  Living her mission to advocate for others, for that is Trisha’s calling.