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Wednesday, May 23, 2012

Pecking Order

I went to Vacation Bible School every summer of my youth.  We called it VBS and I think it was the first acronym I ever used.  I attended many VBS programs, each lasting a week, but my favorite one was at Immanuel Lutheran Church in Breckenridge, Oklahoma.  Breckenridge is a very small town surrounded by miles and miles of red dirt farms.  Most of the roads are gravel and the population has stayed right around 250 since 1970.

I loved this little Church and I loved the kind Pastor with his gentle voice.  His name was Pastor Kjergaard.  He wore his clothes nicely pressed and often wore a sweater that reminded me of Mr. Rogers from PBS.  Every year he would address all the children in the Church who had left backyards and toys to sit upon a pew on a summer day.

Each year he would open a large picture folio and tell us the story of the hen.  I would settle into my pew as Pastor recited a story he had told since the 1950’s using a book from the same time. I loved the vivid Technicolor perfection of each large illustration.  He told us about the Farmer who took care of the farm and the kind mother hen who lived there.  He showed us panels of her proudly walking with her chicks around her whilst pecking at the food.

Then he showed a picture of the hen house catching fire.  Then my eyes would well with tears as I thought of the pain the hen must endure.  All the children would sit in rapt attention as they waited for Pastor to tell us the fate of the little loyal hen.

The next day the farmer found her.  Her feathers burnt, she lay slouched over on the ground.  He gingerly pushed at her and was amazed to find all of her chicks still alive beneath her scorched body.   She lay her life down to save them. 

The children in my pew would sniffle and press their hands quickly against tearing eyes.  Then Pastor would thank us each for coming and remind us every day to please bring one more friend tomorrow.  He would ask, “Could you each just bring one more?  Bring just one more to celebrate with us.” Each day they did.  A child who only attended one day was as welcome as a child who attended all five.  Pastor never worried about whether we would have enough food or lesson sheets to share.  It was more important to make sure everyone was included.  Money could be stretched if needed, it was most important to welcome everyone to the table.

In town of only 260 people we would routinely have 60-70 children in by the end of the week.

I thought of this story when I first began to hear about HENs in relationship to Partnership for Patients.  HEN’s are Hospital Engagement Networks and they work with facilities to help them reach the twin Goals of the Partnership for Patients: a CMS funded initiative.

I am very familiar with the goals of Partnership for Patients as I attended the Kick off meeting almost a year ago.  I was invited to attend at the last minute and in a room filled with members of private enterprise, providers and CMS folks. I was the only self-defined patient in the room.  I even painted that day. The painting was a re-visioning of their logo and title.  It was called “Partnership with Patients.”

"Partnership With Patients"


That meeting was a beautiful moment in time; many who attended it called it an “altar call.”  Organizations and businesses raised their hands proudly, volunteering to do all they could to reduce hospital acquired conditions and hospital readmissions.   In the months after, HEN’s became active and strategies began align. 

I raised my hand to that day and was told patients would be contacted at a later date.  The months rolled by and I learned that Partnership for Patients was still having meetings but I knew of no patient involved in these discussions.  Finally, on April 26 2012, I received emails from those organizing the PFE (Patient and Family Engagement Network.) I had 24 hours to complete a rather complex form to be considered for the committee that would meet on May 22nd and 23rd in Washington, DC.  I then received emails from other prominent advocates who had this short notice as well.  Then we forwarded this information to advocates across the nation.  Many stayed up late into the night to turn in their applications.   

We waited.

Then on May 9th this email came to me and to other advocates who look like this:

Webinar folks
Thank you so much for your recent application to take part in the inaugural meeting of the Patient and Family Engagement (PFE) Network of the Partnership for Patients (PfP). 

Unfortunately, as a result of continuing efforts to reducing spending on travel for federal government meetings, the in-person meeting of the PfP Hospital Engagement Networks (HENs) and the PFE Network has been cancelled. However, creating a collaborative forum for patient and family advocates to provide input and serve as catalysts for action through the PFE Network is still a very high priority for PfP. 

We hope that you will be able to join us on May 22nd from 2:00 – 4:00 PM Eastern for an interactive webinar with a small group of patient advocate leaders in place of a PFE Network in-person meeting.  We are refining our agenda right now in light of the change from a larger meeting, but this would be a very important opportunity for us to hear directly from a small group of leaders such as yourself about best practices in patient and family engagement, share plans for collaborative efforts with HEN hospital leaders and discuss ways a PFE Network could support raising awareness and action on patient safety issues.   

And then on May 9th this email came to advocate who looks like this:

Tiffany and Lupus

Thank you so much for your recent application to take part in the inaugural meeting of the Patient and Family Engagement (PFE) Network of the Partnership for Patients (PfP). 

Unfortunately, as a result of continuing efforts to reducing spending on travel for federal government meetings, the in-person meeting of the PfP Hospital Engagement Networks (HENs) and the PFE Network has been cancelled.  However, creating a collaborative forum for patient and family advocates to provide input and serve as catalysts for action through the PFE Network is still a very high priority for PfP and in the future there will be other opportunities for you to take part in Network activities, webinars and trainings.  Your insights, personal passion and voice as a patient or caregiver leader are very important to the Partnership for Patients. 

Best regards,

There was no invitation to attend via webinar.

Kathleen Siedecki, US director of Global and Public Health from Weber Shandwick a public relations company, managed the webinar in conjunction with Elizabeth Stinson from Public Affairs/Communications from Powell Tate, a division of Weber Shandwick.

And when I say managed, I mean managed.  We were paired with advocates we were supposed to talk to before the event to build collaboration. I suggested we communicate openly prior to the call using email or social media, like Facebook or Twitter. This was discouraged. I asked to live tweet the call using a hashtag so as to include voices left out of the conversation. I was told no.


I tweeted anyway using the hashtag for patient safety. 

I was told that this webinar would be about collaboration. For the first ten minutes of the call, I and another advocate were left on hold.  When we finally got in, the call was filled with power point lectures about HENS and the Partnership for Patients origin and goals. 

The webinar was scheduled from 2:00 to 4:00 pm.  At around 2:40 to 2:50 pm Patients were allowed a few minutes to speak.  But were reminded throughout that we only had a few minutes.  Then the call went back to power points. The common theme within these power point lectures was that patients were complaining they had no voice, oh the monstrous irony!  They briefly showed a two-minute video of my data advocacy work. Then the lecture continued. 

At around 3:30pm when it was pretty clear there was to be no open collaboration in this call, I blew a gasket and told them what I thought.

“Had anyone even apologized for this meeting involving patients occurring almost 1 year after the kick off session? You might have done that in the first ten minute while you kept me on hold.  In a call that is supposed to be a collaboration of patients, you have let us speak all of 15 minutes and I am including my video interview into that amount of time.  There are people on this call feeling marginalized and managed, and I know that because I am getting email messages from them right now.  You want to know how to engage with us?  Grab the domain name Partnership With Patients right now, I just checked it is available.”

With that the dam broke and everyone talked in turn about their very valid concerns.  The agenda was overturned and the call ended with open communication.

I gave them 30 minutes but they did not grab the domain name.  So I did.  Then I started a page on Facebook inviting my wonderful friends who are patient advocates and my wonderful friends who are doctors, techs and nurses, because at the Partnership With Patients everyone is welcome.

We ask you to bring your friends.  It does not matter if you have been working in this field for years or if you just began to today. We welcome you. We will not exclude because of worries that we may not have enough supplies to share or funding for travel.

 Those managing this call forgot something.  They forgot the worse thing they could do is remind us we only have ten minutes of their valuable time.  I have heard this before.  I heard it at the worst moment in my life just like many advocates on this call.

So there are HENS.  What is that old saying?  Birds of a feather flock together.  Do you know what that means?  It means some birds’ feathers are in disarray because they have been hen-pecked.  It creates a caste system within the group.  And some of us unite behind charred and blackened feathers. We unite behind pain and those who have died for this cause.  Someone forgot tell these folks there is a new bird in town, it's blue and it tends to tweet a lot.  So we can no longer be divided by castes in safe little silos, now our thoughts fly.

We will work on our Partnership With Patients Campaign, I invite you to join us.  We will create a PEN, a Patient Engagement Network, for we are all patients in the end.  We all deserve dignity and respect.

And a PEN is really good at writing about injustice and then telling the whole world.


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Update:  I am inviting the PR team behind this call to attend HealthcampDC during Health Innovation Week to get an immersion in the wonderful collaborative method of an un-conference.


Also, I am trying to see if we can assemble during Health Innovation week as so many patient advocates will be in town June 3-June 8.  I will keep you posted. 

33 comments:

  1. "I asked to live tweet the call using a hashtag so as to include voices left out of the conversation. I was told no."

    Given all the givens around this "event" Regina, my questions are:
    - why would you ask?
    - why did you accede?

    I have a few ideas why:
    - we like to think of ourselves as decent, as "players"
    - despite our experiences the notion of "niceness" still exerts too strong a pull.

    As always and ever, a prime element is how to get things moving without getting nasty.

    Most of us are, essentially, volunteers. The benefit and beauty of volunteer status is that *we can do as we damn well please* (riffing in spirit off of "give us our damn data"). NEVER FORGET: as volunteers we can act freely. As ultimately you have in taking, running with, offering up, the domain name.

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    1. I did tweet anyway just used a different hashtag. And have mentioned that is this blog as per your recommendation on Facebook.

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  2. Regina, your story and experience define the patient experience with great clarity. Patient centered care must include patients, patient advocates and patient/consumer groups. Defensively managing and marginalizing patients in decision-making meetings is a practical as herding cats The preventable patient harm we are trying to identify and stop assures that our numbers and frustration will grow and prevail. Thank you for your leadership and courage.

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    1. Thank you Joleen! I was just talking about you this morning with my Aunt. We have a relative who has and implanted patch and is probably allergic to it. I pointed out that when I got my ears pierced at 13 the 19 year old piercing artist in a mall shop talked more about the dangerous of allergic reactions to implanted metals than I have ever heard within the halls of medicine.

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  3. Regina, wow. On one hand I'm speechless at the treatment, on the other hand, sadly, not surprised. Count me in here! I want to be involved and will do anything I can do to that.

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    1. Oh, I well know your power to bring change front and center! We can really use your help!

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  4. I am with you. As always. I will not be silent.

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  5. I know my dear friend and I depend on you. thank you.

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  6. Regina, your capacity to paint striking imagery with words as well as you do with a brush is stunning.

    That this overture to involve patients in a meaningful way stumbled, reflects a mindset that this hugely important step could be "subbed out" to a group (well meaning and capable as any subcontractor can be) that can't know the players, nor grasp the urgency, for historic reasons, to build respect.

    When you truly want to move forward in building a relationship (applying for a job? Attracting a new client? Negotiating a deal?), an in-person meeting is best. Next best is a teleconference (where everyone can see each other). Third is an phone conference where content is driven by the person/group being solicited. Last has to be where that group is asked to carve out two hours to listen to and watch a presentation that (for the most part) might as well have been pre-recorded.

    No offense to the providers on the call whom I believe are sincere in their desire to move forward with our participation. But I found disingenuous the statement right off the top - that "we know you are all busy, and have trouble carving out time from your lives to attend meetings in-person", and that "the webinar format will allow more of you to participate". That's when I began to feel "managed". The truth is each of us that applied to participate was prepared to MAKE the time (yes, re-arranging our lives if necessary) because it is THAT important.

    So yes, we're feeling like our feathers are a little charred.

    I'm hoping that as smart people they will regroup and move forward more effectively.

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    1. I am getting the feeling based on follow up calls that they are willing to learn. The beginning was mangled and too long delayed, but we can build a partnership of mutual respect if each of us get a chance to listen and talk.

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  7. Ugh! - this is so disheartening and frustrating, but indicative of the clubbiness and haughty attitude that permeates the medical community. I am continually amazed at how often I am talked down to - how often it's been assumed over the last 12 years of advocating for my brain-injured son that I am totally ignorant. Not once has a doctor, nurse or other medical professional taken the time to figure out I have a brain, I have learned a lot in 12 years and I happen to have a wonky Master's degree!! I don't know how we will get anywhere in patient reform unless the medical community opens up to the possibility that intelligence and insight exist in many places and in many forms outside the parameters of the formal medical community.

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  8. Ugh, is correct. Working on team building overtures as we speak...

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  9. I have had this post as well as 'Error 404' open on my long extensive tab-list on my browser. As each day goes by numerous more tabs are opened, articles read & bookmarked for later, many of them whittled to 140 characters and tweeted or posted amongst various patient communities on Facebook.

    As I read this post on the pecking order, I began to remember your tweets from last night when you told me, "How do you keep patients on the farm when they have learned to parry." I didn't understand the entirety of your tweet in relation to this post. I understood your tweet due to my own frustrations with an Australian physician's rheumatology post on lupus; his cold words slapping lupus patients across the globe with a dismissive tone...I spoke up, I would not remain silent, and have even had many a patient or physician step back in fear of what my speaking up "might do".

    I must confess when receiving the email after sending my application out in the wee hours of the morning, pressed for sleep, and right before a medical health-geared conference I felt much apprehension. When participating in these medical/health conferences I always feel like the "under-dog". I look around and I am a smidgen of color among a sea of white. I often wonder if it is even worth it to speak up. Will they listen when quite often my voice is ignored and over-looked. I am not just a patient; I am a patient of color, and in many of these conferences I am often reminded of that regardless of my intellect. Some do not see pass the color.

    I admit it does hurt that the email I was sent was entirely different than all the others sent. When I read it I had this gut feeling that I knew exactly why I was sent that response. So when I read your frequent posts on it I admit I was completely shocked!

    Thank you for sharing Regina. You are a beautiful person inside AND out. You encourage me to continuously speak up and out loudly not only as a voice for all patients, but also against the prejudice that people of color still endure today. Thank you.

    My feathers may indeed be quite charred from these experiences but I will not let that stop me from spreading my wings in flight for positive change.

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    1. Ah beautiful Tiffany, you see beauty within my soul as I see it within yours. Nothing will ever stop us from flying above the thousand small and not so small indignities within our lives. we have both been through the crucible but are still believe firmly that great change is possible. We can storm the barricades and let our elder statesmen lean upon our shoulders as we charge the gates. It it takes the energy of all to rise in revolution. I will do everything in my power to make sure you are part of the next meeting and all thereafter.

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  10. I remember when you put out the info to apply - I had tried to fill out the application but couldn't pull it together in that timeframe. Now, much as I hate to say it, I'm almost glad because I would have lost my mind going through that call. Today at our event we went over the Digital Patient Bill of Rights, and I covered the two tenants about the patient voice: The patient is the largest stakeholder, and the patient experience is a valid clinical resource. They are two of my 'favorite' items in the list of six.

    I really can't commit to more than this due to other traveling I'll be doing and an important doctor appointment, but if you do have something come together I should be able to participate on June 4.

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  11. Woot! It sounds like that is a rocking digital health statement. As far as the 4th can you come to Healthcamp that morning at the KP building? I think we will propose a session on this.

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  12. This old bird is so tired she can hardly lift her wings. She is very thankful for the new blue bird in town who . Whose tweets, talents and energy have blessed the entire flock. Thanks Regina.

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    1. Thank you. It is all of us working together. We shall prevail.

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  13. *Stands up and gives huge round of applause, complete with a bit of bouncing and crys of, "Whoop! Whoop!"* Thank you again for being the advocate you are...for all of us!

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  14. Sometimes we just have to speak out of turn to have a turn to speak :)

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  15. Follow-up call yesterday from organizers indicates they "hear" us and want to do better. This would not have happened without your speaking up as you did! I won't be in Internet contact next 10 days - but at the rate you're going, I fully expect you to solve this whole thing by the time I get back :)

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  16. I got the same vibe. They are planning to come to health camp June 4 in DC. Will you be able to come?

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  17. I was traveling & speaking the past two days - this is INCREDIBLE, Regina. You ARE a force of nature.

    So, was that "interactive" webinar archived for us all to hear?

    This whole thing strikes me as the very definition of paternalism: "WE will have a partnership FOR you. Don't worry, we'll take care of you. We'll let you know if we want anything from you."

    I'm heartened to hear that the organizers *say* they hear you. Let's do everything in our power to teach them what they haven't realized. It seems pretty clear that they just haven't "gotten it" yet; let's help them get it, and let's not take "Not yet" for an answer.

    Someday there will be a statue of you... or maybe not, because a statue can't show the thousands and millions of patients and families. So it'll probably be ... a mural.

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    1. Dave, thanks for chirping in when your travel schedule is so insane. They have agreed to go to healthcamp which makes me very hopeful for future collaboration. Onwards and Upwards!

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  18. Having worked in healthcare in various capacities, I can attest to the pervasive paternalism that e-Patient Dave describes. For all the talk of "patient-centered care", the patient is usually an afterthought.

    There's so much infighting between doctors and hospitals, doctors and insurers, hospitals and regulators, etc., that the there's little time or energy left for patients.

    Add to this indifference the underlying reality of defensive medicine - admitted to by over 90% of doctors surveyed - that views patients first as potential legal adversaries. No wonder they call office visits "encounters".

    To quote Dr. Victor Montori of the Mayo Clinic, "We need a revolution". And it doesn't need to rely on the good will of our providers to allow us sit at the table - as Regina is demonstrating with her initiative.

    Perhaps they need reminding that without patients they all go broke.

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    1. Thanks John! I say we step up and insert ourselves. Lets get messaging into facilities that we design not what they make for us or for themselves. Patients are amazing diverse and have great ideas let's start harnessing our own power! We need true partnership with anyone who is willing hold us as we hold them. Nothing about us without us. We are all patents in the end!

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  19. Regina, kudos for standing up for us all. It is early in the morning CA time where I flew last night and had been basking in the warm glow from attending a Partners in Patient Health meeting back in DC where patients and patient groups were invited in at the start. Sigh! There is much work still to be done to create a policy and systems design culture where we are FIRST on the list rather than last. Also, on the point of subcontractors -- contracting is a powerful tool and we should not let CMS off the hook for choosing a firm unqualified to do his sensitize work. See you June 4.

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    1. See you then~ I know you are a fellow firecracker on this issue and others....

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  20. Paternalism and bureaucracy kill people every single day. Kudos to you for shouting in their faces and actually getting their attention!

    We do need a revolution. We need to stop asking permission, and start taking firm action - you've kicked that off, and now it's up to all of us to storm the healthcare Bastille and demand that this Kafka-esque vaudeville act gets the hook.

    I would *love* to attend HealthCampDC, but not sure if I can until some receivables arrive - will be there if humanly possible! And will mos def be at the Walking Gallery.

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    1. My patient figures are starting to carry banners and flag now in the paintings. Waiting has passed, doing is now!

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  21. Bravo!!! Bravo Regina!!! I just met you through friends on Facebook. I am an RN that is beyond disillusioned with just the sort of cluster-f*** care and management you are talking about. I happen to have over 30k followers on twitter so I almost stood on my chair and applauded when you posted "Someone forgot tell these folks there is a new bird in town, it's blue and it tends to tweet a lot." Go for it, Regina. what's the hashtag?

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    1. Thank you. Hashtag suggestions have been #pWp and #flockhealthcare. Would love your input!

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  22. There are things we can do that are not a waste of time, but our minds are mired in a paradigm that it is rude to disagree with, even though it is nonsense.

    A decade ago it was heresy to suggest that having doctors sign patient safety initiatives was never going to make a measurable difference in the rates at which patients are ruined by them one way or the other. It took a decade of wasting time on that for patients to figure that out.

    Now everyone wants to partner with them. It's the wrong paradigm. It is a misunderstanding of the problem yet again, to think that this will actually change the rates of unnecessary deaths and bankruptcies across the nation. But this apparently is another phase we have to wade through for a decade before people figure out that it is no better an idea than getting them to sign patient safety initiatives.

    Including them in the effort to solve the problems prevents the problems from ever being solved. The problems can be solved, but not with them. Only without them and in spite of them.

    Getting them to listen more and include us more is a great thing, but it is like chrome on a car bumper. First you need the bumper. We don't have that yet. There is no point in getting the chrome until we do.

    Anyone want to talk about getting the bumper?

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