Monday, February 9, 2015

Designing the CF Care Model of the Future, Part 2

As I mentioned in my last post, I was recently asked to be a part of a very exciting meeting to change the way we care for those with Cystic Fibrosis.  To understand what we did at this meeting, watch this video and imagine the "the shopping cart" is the current way we do CF care: https://www.youtube.com/watch?v=M66ZU2PCIcM

The meeting was held at the Cystic Fibrosis Foundation, which was one of the things I was most excited about.  I wanted to see the headquarters of the place that employs those charged day-in-and-day-out with saving my son.


The CF offices are tucked in a modest nondescript office building.  Other than a few inspiring quotes about finding a cure for CF on one wall and a few pictures of those with CF, you might not otherwise know you were at the Foundation charged with saving lives of those with Cystic Fibrosis.  This building (see in picture above) houses most of the offices of those who work for the Foundation.  You would never know from the outside.  There is no signage stating this is the CFF and the building is shared with other businesses.  I remember once hearing Bob Beall, the CEO of the CF Foundation, say that they would rather spend money on a cure than money on a building.  I am so glad for that.


The Design Meeting included an eclectic group.  Those who were invited were made up of technology, social media and healthcare experts, CF clinicians, CF patients (all but 1 were virtual) and caregivers of CF patients.  All meeting attendees had the word "designers" on our name tags, as we were being asked to help redesign the CF Care Model.  But, only those with CF or caregivers of those with CF were considered "expert designers" since we know the current CF Care Model best (we use it every day).  I think this really set the stage for two days of conversation in which the patients and caregivers felt their voice was as important, if not more so, as the experts in the room.


Everyone was placed in pods to facilitate communication.  The entire room had access to TV screens and microphones.  The goal was that we be in constant conversation with each other and online.  The goal was share and learn from each other and those outside of the room!


There were a handful of CF patients invited to this meeting.  However, due to cross infection issues with those with CF, those with CF had to be virtually present (other than 1 person with CF who was present in the room with us).  This is why it was very important to have monitors and microphones throughout the room.  We needed to hear and see them and they needed to hear and see us.

One thing I loved was how those with CF on the monitors were called ViPs (Virtual Participants/Virtual Patients).  There is something about hearing the words VIP.  We are conditioned to know that when someone is referred to as a ViP, what they have to say or what they are doing is important.  Each time someone would say, "we have a question from our ViP" or "let's see if our ViPs have anything to say about this, " I would instinctively sit up and listen.  I loved that.  It really showed me that, while being present via technology is not the same as being present in person, it is possible for one to begin to forget the technology and begin to see the person as actually present.


Dr. Bruce Marshall, VP of Clinical Affairs for the CFF, addressed our group at the beginning.  One of the things he said that I really liked hearing was: "The [current] CF Care model was developed with minimal input by patients and families and can be improved by bringing them to the table."


This is what it looked like from my seat when I turned around towards the back of the room.   Everybody had a microphone nearby so focus in the room would regularly change to around the room.


One of the first things we talked about when we got there was what exactly was the #CFBigIdea - what were we there to do?  We talked about how our job is to create a transformational change, to design a new system and to create a model for improvement.   Our job is to do that as an ongoing effort but punctuated by two design meetings.  There will be another design meeting in the near future.


One of my special jobs as an "Expert Designer" during this meeting was to share Bennett's story. During one of our break-out sessions, I was asked to tell about our life with Bennett.  I shared about Bennett's birth, his surgeries, his treatments, my relentless search for help for him when no one would listen, my disagreements with doctors, my leaving one clinic and going to another, the loneliness of having this disease and the fears that come with it.  This picture is of Susannah Fox (an amazing person and a social media and health care expert) presenting my story back to the group (she's a  lively so that's why her hair is flying).



While I shared Bennett's story, the people in my group were asked to use post-it notes to write a part of my story that they thought was compelling.  The use of post-it notes was to engage each person to really hear and see how the current CF Care Model works in Bennett's particular case.  Then, our work group was asked to collect the post-it notes and put them in groups according to their themes.  These themes were later presented to the entire group to discuss what we found to be issues in the current CF Care Model.  Several other workgroups did the same.  It was very enlightening.  (Watch this to know why we used post-it notes.)


One of the sessions we did allowed different work groups to present research they had done ahead of time to our group about the assessment of the area of the CF Care Model they were working on.  I really liked this slide from the CF Care Center/CF Clinic group.  It's hard to read most of it but I it's easy to see "staff turnover" and "time" as two areas that the CF Clinics communicated they struggle with in caring for those with CF.  As a patient/caregiver of a patient, I would agree that staff turnover (losing well-trained nurses, for example, or having doctors move clinics) is something that does interrupt the care of those with CF.  I have also heard clinicians say that the amount of time doctors have to spend charting or the amount of time nurses spend on pre-authorizations for prescriptions so interrupt the care of those with CF.


We had several workgroup presentations. It was wonderful to hear about the amount of work that is going in to understanding the current model of care so we can improve it when we come up with a new model of care.


Part of the value of the meeting was the presentations and workgroups.  But the other part was the conversation during lunch.  I really enjoyed getting to know all of the people there.  Each person was interesting as a person and added so much to the group!


Since those with CF who were virtually present weren't able to each lunch with us, the C3N project putting on this meeting in collaboration with the CF Foundation offered to buy lunch for each patient at a local lunch joint near them.  I thought that was a really cool way to help the patients who couldn't be there in person feel a part of the larger meeting.  They deserved to be provided a meal too! (Check out Julie doing her treatments during our meeting - this was encouraged so it would remind us how much time in a day a person with CF must take to care for themselves.)


At one point, we had a chance to visit existing projects to see if we could gleam ideas from them that we might want to incorporate in our new CF Care Model.  Roni, from SmartPatients, is explaining how his social community focused on patients works and how it could benefit those with CF.



Ian Eslick (@ieslick), a scientist and entreprenuer shared his project Orchestra, which offers patients an opportunity to track their own data to share with their doctors.


I love this picture alot!  This is Mary Dwight from the CFF talking to Max Clemont from Nation Builder about a networking system for Adult CF patients. Sophia, holding the computer screen, was actually walking around with the virtual CF patients so they could also hear the conversations.  She had an earpiece in so that she could ask a question on behalf of the CF adults listening should they want to interject.  Again, I was amazed at the effort put toward trying to keep the virtual patients (ViPs) included in our meeting at every point.



I really enjoyed this project. It doesn't look like serious business by the look of it.  But, it was a pretty neat way to dream up a new CF Care Model.  Our group were given several cards with names of successful companies in the US (such as Google, Nike, Pepsi, etc).  We were to pull those cards and ask ourselves how that company might design a new CF Care Model.

The board shown in the picture was our illustration of how the new CF Care Model might work if it was designed by BMW.  We talked about how BMW would make a CF Care Model that would be of the highest quality - a smooth ride, efficient, highly dependable, never breaks down, includes technology and incorporates the most up-to-date science.   We talked about how BMWs have GPSs and how we want our CF Care Model to have a map of how to get from point A to point B.  We talked about how there would be choices in the CF Care Model, just like BMW doesn't make things one-size-fits-all.  We want to be the "pride of the fleet" and the "leader of the pack" in way of a chronic illness/orphan disease care model.  You get the picture. :)



At the CF Care Model Design meeting, we were highly encouraged to be on our computers and tweet during the entire meeting.  The hope was that we would share our ideas and gain new ones but making everything we did at the meeting public.  I loved this because it pushed the conversation from being inside the room to being outside of the room.  It also reminded me that, although I was fortunate to get a chance to go to this meeting, this meeting isn't just to benefit my child but to benefit all people with CF - those who are able to go to meetings like this and those who are not.  We all ought to have a voice in how we change the way we care for people with CF.


These are just two of the amazing people behind this CF Care Model Design Meeting project. The guy on the left is Michael Seid (@michaelseid11).  The guy on the right is George Dellal (@georgedellai).   Both are fantastic people and are SO good at what they do!


Equally as wonderful are Susannah Fox (@SusannahFox), a healthcare and social media guru and Roni Zeiger (@rzeiger), CEO of SmartPatients.   I wish I had a picture of all of the people who came to the meeting because each one of them was an expert in their respective area and it was awesome to hear from such smart people.  And better yet, I loved hearing those smart people dream about ways to improve our system of caring for those with CF!



Probably the best part of getting to go to this meeting was getting to spend some time hanging out with this CF Mama.  Erin (@ekeeleymoore), a CF mom from Ohio, has 4 kids, one of which is a 5 year old preschooler with CF (just like Bennett).  We enjoy each other's company (which is usually virtual) and love learning from each other.

When Erin and I were hanging out together shortly before the meeting, I realized: Erin and I could very much spend our time crying with each other, for we share the same grief as mothers with children suffering from an incurable life-shortening disease.  But, instead, we share each other's passion for finding a cure, fixing our CF care system and living life to the fullest in the meantime.

This trip was an amazing opportunity.  Work on designing a new care model is continuing to happen right now!  I will share more updates as I have them but for those with CF who might want to weigh in with their own ideas and suggestions, tweet us using the hashtag #cfbigidea.  Something better is on the horizon!!

Thursday, February 5, 2015

Designing the CF Care Model of the Future, Part 1

What if your child was given the diagnosis of a chronic life-shortening disease that meant that, for life, you would be chained to an inefficient, expensive, paternalistic health care system and required an extensive daily health regime prescribed by primarily by clinicians, insurance companies, bureaucrats and researchers - and that you, as the patient/caregiver, were to have no voice or choice in your care?

But then...

What if your child was given the diagnosis for a chronic life-shortening disease that, for life, you would be a part of a seamless transparent collaborative individualized system built on trust between the clinicians, insurance companies, researchers and other patients/caregivers that focused not just on improving health but focused on whole person's well-being and quality of life - and that you, as the  patient/caregiver, would be the primary decision-maker of your child's care?

Making the later happen is why I was in Bethesda, Maryland a few weeks ago.  

I was among 40 experts from a variety of backgrounds from all over the United States and beyond who were asked to come to a two-day meeting at the offices of the Cystic Fibrosis Foundation to help recreate a new Cystic Fibrosis health care model. 



It will be hard for me to articulate fully in this one post about what went on during this meeting so I will make several posts about it.  But I can say, the CF Care Model Design Meeting didn't just inspire me, it transformed me.  

I am already an engaged patient/caregiver in Bennett's care.  I work to be informed.  I fight to have a voice.  I help make decisions.  I try to work collaboratively with Bennett's doctors.

But the system is very broken and despite my best efforts, I often feel helpless.  I struggle to get the data I need to make decisions for our family and my child.  Much of my day is spent waiting for doctors to call me back, renewing prescriptions at the pharmacy, traveling great distances to attend lengthy doctors appointments and doing Bennett's medical care at home.

There HAS to be a better way.

In another post, I will share more specifics about the meeting, how it came about and what we did while we were there.  But, I want to use this post to just share some of the ideas that we talked about.

I realize that most of these statements aren't going to make sense to those who have never felt trapped in the health care system.  The average person, the relatively healthy patient, isn't likely going to fully understand the stress of being stuck in the system or being overwhelmed by day-after-day management of a chronic illness.  

But, my hope for those CF patients/caregivers or for anyone with a chronic disease (Crohn's, Cancer, Diabetes, etc.) stuck inside this broken health care system is that these statements will be helpful in changing the way we think about the future of our care.

Here are just some of nuggets that came from this meeting...all are written as "what if" statements as it's one of the best way to dream a new system in to existence...
  • What if an ideal clinic visit was one that happened at home?
  • What if we could have our CF visit summary emailed to us?
  • What if we shift our understanding of who is the expert from the doctor/care provider to the person with the disease?
  • What if care providers stopped doing stuff FOR us and started doing stuff WITH us?
  • What if we never had to fit Cystic Fibrosis treatments in, if treatments no longer became a barrier to other parts of life?
  • What if there were no more CF waiting rooms?
  • What if exam rooms at clinics were more like living rooms?
  • What if we saw patients as having the right to learn, to access their health information?
  • What if we saw our CF community as being much bigger than patients, parents and providers? What if - home care, school care, the drug store, the clinic - all systems could fit together to support people with CF?  
  • What if we had need-based personalization of one's CF health care plan?
  • What if we had individualized collaborative care, not cookie cutter collaborative care? What if we were proactive, not reactive - how might we build such a system?
  • What if appointments weren't so long - for example, what if I didn't have to see the social worker every clinic visit if nothing is going on?
  • What if the patient/parent was the quarterback of their health/life and the care team was the support?
  • What if teachers, parents, pharmacists, clinicians were all part of one whole system of care for one child?
  • What if we adopted the approach: the patient is always right!?
  • What if everyone had access to CF families like them?
  • What if we eliminated the "no news is good news" way our clinics communicate with us? Patients want to hear the good news too!
  • What if we had a CF care "Angie's List"? What if you could rate your CF doctor, Respiratory Therapist, Dietician, Pharmacy, Hospital, etc.?
  • What if labs could be completed before clinic visits so the actual clinic visit could be used for discussion of results?
  • What if CF care centers were publicly graded on their patients' awareness of CF support services?
  • What if you had access to your own personal cystic fibrosis health research scientist?
  • What if every patient automatically received a regular report of relevant clinical trials?
  • What if I could follow the drugs currently being trialed that would help me - an individualized CF drug pipeline?
  • What if we knew how other centers were doing, so we can compare results and learn from each other?
  • What if we had more discussion (virtually) with our care team on a regular basis, not just 4x/year in person?
  • What if we had shorter visits focused on individual patient needs rather than repetitive questioning?
  • What if care focused on how to use our treatment time most efficiently, not just more?
  • What if I (the patient) didn't need permission to make my own decisions?
  • What if I had access to my own data AND aggregated data in (close to) real time via the patient registry?
  • What if data and information was actionable, in the moment and meaningful for everyone involved in my care decisions?
  • What if patient-reported outcome discussions gave us a chance to align what success looks like and spot early sickness?
  • What if we shared the data that we as patients already track?  How can we automate tools on behalf of the patients?
  • What if doctors and scientists told us what they were working on and invited us to join them?
  • What if we had more transparency and consistency for trust and confidence in the CF clinician and CF patient relationship?
  • What if research focused on reducing the tremendous treatment burden in cystic fibrosis?
  • What if we included patients in setting the research agenda - a huge opportunity for learning and impact?
  • What if we had access to transparent personal and systemic data with crowd-source validation?
  • We live, breathe and track our illness every second with every breath we take. What if our voices were valued as patient scientists?
  • What if we didn't feel the need to lie - what if we trusted our clinicians enough to tell the truth about treatment adherence?
  • What if we had an easier way to track data so that it's available for decision making?
  • What if we had transparent shared-governance at the CF Foundation level?
  • What if we had a system that was more flexible?  Having CF means you have a ton of burden. People with CF aren't just their disease.
All of those at the meeting, and many more, are on Twitter listening to new ideas.  Log on to Twitter and use the hashtag #CFBigIdea to share which of these statements you agree with most - or maybe come up with your own "whatif" statement.  You can also use #whatifhc when you post.  My Twitter handle is @breckgamel.  I hope others will join us in a revolution to the status quo in CF Health care.  More posts to come as we develop something new, different and better!

Monday, February 2, 2015

Sitting with friends during their son's surgery

A few weeks ago, the day before Bennett's surgery, I made a special trip to Dallas to be with our long-time friends, Tim and Cynthia.  Our friends, whom we knew from our 3 years in North Carolina, they had researched the best doctor in the nation for treating the sagittal craniosynostosis repair of a full Cranial Vault Remodel and decided traveling across the country from Raleigh to Dallas for Dr. Fearon and the Medical City Children's Hospital staff was the best decision for their 3 year old son, Evan.


I was fortunate to arrive in just enough time to get to see Evan myself as he was in the final stages of preparation for his surgery.  It was a new experience for me to be the patient advocate and play the support role in this surgery preparation, rather than to be the caregiver and mom of the patient.  I knew this was an intimate moment - having to give up your child to the clinicians for surgery.  I felt nervous and awkward.  Was I being helpful?  Was I in the way?


But, Cynthia and Tim reassured me that my presence was very helpful and very welcomed.  I pulled out my camera to capture the moments when Cynthia and Tim said good night to their son...


...and placed him on the hospital bed to be wheeled him back to surgery.


After saying goodbye, Tim and Cynthia and I went downstairs to the cafeteria to eat.  The surgery was going to take a few hours so we knew we had time to catch up on what was going on in our lives, since we hadn't seen each other in a few years.

About 15 minutes in to our eating turkey sandwiches, we watched as Evan's surgeon casually walked by the cafeteria.  The three of us laughed at the strangeness of knowing Evan was upstairs in the operating room but that the surgeon was still just walking around downstairs.  We reminded ourselves that, even though medical procedures are momentous occasions for families, it's often "another day in the office" for surgeons.

After we were done eating, we went to the Family Resource Room downstairs at Medical City Children's (btw, this is a different children's hospital than Bennett goes to for his CF care).  This Family Resource Room was amazing.  We sat in comfy chairs in a dark corner lit by a lamp with a soothing water fountain nearby.

Cynthia snuggled under a blanket.  Tim drank his coffee.  I typed on my computer to place updates on their blog.  The three of us chatted quietly, even laughing, all a way to release the tension as the moments ticked by.  Waiting for your child to come out of surgery can often feel like time is crawling.

We were able to get updates as often as we wanted by calling in to the OR.  The nurses updated us on his prep, his surgery and the closure of his surgery.  We enjoyed knowing things were going well with Evan, that he was sleeping comfortably and a warm blanket.  We also enjoyed the time in between these calls to the OR when we temporarily forgot about the surgery and were engaged in conversation.

After a few hours, it was time to meet Evan in recovery on the PICU floor.  About the time Evan was coming out of surgery, I had to leave and return back to Waco.  It was my turn to go home and pack and prepare for Bennett's surgery scheduled for first thing the next day.  But I did have a chance to glance at Evan as was being wheeled in to the PICU.


He looked great well for a child who had just had parts of his skull removed and replaced.  But, as we were all to see, the swelling had simply not taken place in yet.


Over the course of 24 hours, the swelling would be so severe that Evan's eyes became swollen shut.  Poor little guy didn't even look like himself for a few days.





I found it hard to be at the hospital with my little guy when I wanted to be at the hospital to support Cynthia and her little guy.  But, we used texting to keep and touch and encourage each other.


Evan is now at home in North Carolina and doing better.  Unfortunately Evan's recovery has been a lot harder than Bennett's.  It will take a month before all of the swelling goes down.  And, it may take longer for Evan to adjust to all the changes that came about from the surgery.  But, we are all relieved the surgery is over and went as well as expected!


Before I left the hospital, we took some pictures to document our time together (Brian wishes he could have been there with us too).  

Thank you, Tim and Cynthia, for allowing me to come be with you during your Evan's surgery.  As one who has regularly been the beneficiary of other's love and support in our journey with CF, it feels good to be able to share that love and support with you.  To follow Evan's story, go here.

Friday, January 30, 2015

An update on Bennett

I wanted to post an update on Bennett.  Bennett is doing extremely well since his surgery.  He has been able to go to the bathroom without rectal prolapse affecting him anymore, which has now led us to the final stage of potty training - how to wipe appropriately all by yourself!  We are also most there. :)

Here are a few pictures of just some of the love Bennett received both in the hospital and after arriving home.  Thank you to those who wanted to make sure he had something tangible to know he was being prayed for and thought about.  Surprises, such as these, help Bennett associate hospitalizations/painful procedures with a Christmas or Birthday-like joy.  This is exactly why I think he went in to the surgery with such a joyful spirit.  He had been treated well during his last surgery so I believe, going in to this surgery, he thought, "this is going to be fun!" (which it was!).


Bennett, always with a sweet spirit, chose to share his gifts with Oliver.  Oliver never indicates to us that he is ever jealous or upset at Bennett.  He knows that Bennett has to go through a lot.  In fact, both boys seem to have a real understanding of and love for each other.  They know one is in pain, the other is not - one gets gifts, the other doesn't - they both seem to go through each other's pain and joy together.

The surprises sent by friends and family were not all just for Bennett.  Oliver did receive a few of special gifts of love, as several friends made sure to remember our entire family when they sent packages - something we had no expected at all.  Even sweet little Avonlea received a surprise - her first dress-up play dress.  


In addition to surprises, our sweet  and always supportive Waco friend Kimberly Back made sure to bring us a meal after we got home from the hospital, which we very much appreciated.  I wish I had a picture of what she brought us - but we devoured the meal too quickly. :)


And, this package, pictured above, was very meaningful, as written in the card were the words "with more love than could ever fit in a box."  It was like receiving a hug from friends far away.  I just had to laugh when I found included the box a roll of coins, which represented the diet cokes they would have liked to have mailed me.  My girl friends know me well. :)

Thank you to all who sent love, in whatever way you did - text, calls, emails, FB messages, gifts, meals, visits, etc.  You are those who make the unbearable bearable.  We felt and still do feel immensely loved.

Friday, January 16, 2015

Hospital is full. Bennett is a rock star. We are going home!



We think Dr. Perger may have gone up to the floor to check on Bennett but she didn't find him.  Because we aren't there...and never have been.

The truth is, we never made it out of the Recovery Room.  Instead, we spent 5+ hours in the Recovery Room.  Five!

This is not usual.  I have gathered it may have been an issue with a full hospital and a shortened cleaning staff.


(Bennett is smiling because he learned that if he needs another popsicle, he just pushes this red button.)

But, for whatever the reason, Dr. Perger came back down to the Recovery Room to find us.

And this is what she found:


Bennett has done phenomenal with his recovery.  Even better than THEY expected.
So, she decided to release us!


Whooo-hooo!!!  We are headed HOME!!



"The doctor got inside my body?! She went in there??!"

Bennett did not cry at all throughout his entire ordeal yesterday...

...until I began changing him from his hospital gown to his pajamas in preparation to go home from the hospital. Then, all of the sudden, Bennett noticed his fresh scars again and began to cry. 

Once I was able to calm him down, I learned he was very scared about the blood, particularly the black blood. (Bennett later explained that he knows blood is never a good thing to see and then he also knows that things that are black are usually scary...so he reasoned surely black blood was awful!)

I explained that while he was asleep, his doctor had made a tiny cut with a knife...

"A knife!?!" Bennett exclaimed.

"...not a kitchen knife, a special hospital knife..." I interjected. "Then, the doctor went in your body and fixed your intestines."
"The doctor got inside my body?!  She went in there??!"
"...she didn't physically get inside you, sweetheart, she put a tool in there to fix your body."

Finally, I was able to calm Bennett down.  I promised him I would explain more when we got home.

Once we were home, we showed Oliver Bennett's scars. He has three, two at his waistline and one in his belly button.  They are scars from where the robotic arms were placed to perform the laproscopic rectoplexy.  

I tried not to explain too much to the boys about a robot going in Bennett's body. The boys already see those sorts of things in some of their superhero cartoons so I didn't want to freak them out any more than necessary.  Nonetheless, here is what one of the robotic arms looked like:



Bennett had a good night.  He wasn't sleepy like the rest of us were (he had slept all day) so he stayed up late playing with his toys a flashlight in his room.  Despite being given a prescription for Hycet/Hydrocodone, he has needed nothing more than Tylenol ever few hours. 

Bennett did wake up his morning asking more about his surgery and why he has blood.  So, this morning, I pulled out a few tools of my own and acted out Bennett's surgery on his favorite stuffed monkey.

First, we pulled out our medical toys to explain why rectal prolapse happens in the first place.


Then, I gave Surgeon Dr. Bennett toothpick tools to cut tiny incisions in Monkey's belly so he could fix his rectal prolapse.

After fixing Monkey's intestines, Bennett placed surgical glue on the incision sites to close him back up.

Once Monkey was done with surgery, Surgeon Dr. Bennett had a Q and A conversation with Monkey about what happened and why Monkey has black blood in three areas of his tummy.  Bennett did an amazing job articulating his understanding of what happened.  Doing this reminded me the power of role play for children in situations such as these.

Bennett is staying home from school today and won't go back until Wednesday of next week.  We will have to go up to Dallas on Tuesday for a Cystic Fibrosis appointment to monitor his weight gain and to meet with the GI doctor there.  This should give him plenty of time to recover before he goes back to school.

Bennett will be able to take a bath in a few days.  But I am most hopeful that, at some point today, his colon will become active again and we will learn whether or not the surgery worked - can he again have a bowel movement without rectal prolapse?!  What a joy that will be!! :)