Saturday, March 28, 2015

"...until there is a cure."

I won't be able to find a cure for Bennett alone.

This is why it is so incredibly meaningful when a friend shares Bennett's video on Facebook, or when a friend retweets Bennett's story on Twitter, or wears our Bennett's Brigade t-shirt, or walks (even leads) a Great Strides Walk or gives a donation to the CF Foundation in honor of Bennett.

Just last night, my friend Jenny was on Facebook asking to purchase a Bennett's Brigade t-shirt for her son to wear at the St. Charles, Missouri Great Strides Walk.  When I double-checked on the size t-shirt she had ordered for her little one, she explained that she was buying a size up for Alex to "last him a couple of years" because, she said, "we will do this until there is a cure."

I cried.

With those 9 little words, Jenny reminded me how I am not alone in this.  Not now.  Not later.

As Bennett's mama, I know I will do this year and after year.  I will walk.  I will ask for donations.  I will share his story.  But always lingers a little fear inside me: "Will this year be different? Will anybody come?  Will anybody give?  Will anybody care?"

Each year, I fear I am alone in this.  And yet, each year, I am gracefully shown: I am not.

The Great Strides for a Cure for CF Walks that Bennett's Brigades participate in all around the country are about hope.

Our Walks are celebrations of the money raised, to date, for a cure - and celebrations of the support and love that surrounds Bennett as he fights this terrible disease.  I am so touched that there are friends who I haven't seen in more than 15 years who are leading Walks in their areas, asking for participating and donations from their friends for my son.

This weekend we have to finalize our order for our Bennett's Brigade tshirts.  If you haven't already gotten one and want to, please email me at breckgamel at by Monday, 3/30.  It's hard to believe Great Strides 2015 is here!!

For anyone interested in walking or donating in honor of Bennett at any of our CF Great Strides for a Cure Walks across the country, please sign up or donate using the links below:

Thank you to the many of you who remind Brian and my family that we are not alone in our battle with Cystic Fibrosis and our efforts to find our son a cure.  It is the consistent love and support that brings us hope in the midst of despair!

We are so honored to have you join with us in this fight!!  We're #InItForBennett!!

Wednesday, March 25, 2015

Advocating on Capitol Hill for Bennett

This past week, I traveled with all three kids to DC to advocate on Capitol Hill for Bennett and all those with Cystic Fibrosis  (Brian had to stay back to work).  This year, I took Oliver to advocate with me.

This was my third year to participate in the Cystic Fibrosis Foundation's annual "March on the Hill" day in Washington DC.  It is a special day where the CF Foundation arranges meetings with Congressmen and their staff so CF caregivers, friends and family can communicate our need for a cure.  

Those with Cystic Fibrosis are not allowed to come to CF events such as this one, due to infection control issues.  The CF Foundation recommends that no two people with CF be within 6 feet of each other as they can inadvertently get each other sick.  So, while Bennett couldn't be there.  Oliver was there for him instead.  (My mom watched Avonlea and Bennett for the day.)

After a morning of training, more than 100 CF advocates emerged on Capitol Hill to speak on behalf of those with the disease.  One of my first appointments was with Congressman Barton (who happens to share a birthday with me - random!).  I attended this meeting alongside the Northeast Chapter of the CF Foundation's Executive Director, Amy, and Debbie, also from Dallas, whose sister died from CF in 1979.

I just had to mention this sweet lady, Krista (in red), Congressman Barton's Counsel and Legislative Director because she was absolutely fantastic.  She knew so much about CF before we ever came, because she studied up on it.  To my surprise, Krista had already found Bennett's video and was incredibly up to date with the newest information about CF as she had recently attended a meeting put on by the CF Foundation for Congressmen and their staff.  Krista was such a delight to meet, making our first Congressional meeting a really great one!  

As CF advocates, we had several requests when we met with the Congressmen and their staff.  First, we asked them to support the EACT (Ensuring Access to Clinical Trials) which makes permanent that those with rare diseases who participate in clinical trials not have to count as income up to $2,000 in compensation which they receive for participating in those clinical trial.  Doing so has previously jeopardized the health insurance and social security disability benefits of those with rare diseases like Cystic Fibrosis.

This is particularly important issue for those with CF as 1 out of every 2 children with CF and 1 out of every 3 adults with CF are on Medicaid and/or Social Security Disability.  It would be very sad if patients had to face the choice of participating in clinical trials, which helps the entire CF community, OR losing their health insurance because they made too much money due to clinical trial compensation.

Cystic Fibrosis is an orphan disease.  That means the number of CF patients in the US is small. Those who qualify for clinical trials for CF drugs is even smaller.  I'd hate to see that even fewer patients would be available to help us test a cure.

The good thing is the EACT has been the law for the last few years but it had a "sunset" clause on it, which meant it expired at some point.  Now, there is an effort to make EACT in to a law permanently.  It's a bipartisan effort and hopefully should pass.

On our second visit of the day, our team met with  Congressman Pete Sessions.  Congressman Sessions was very playful and seemed to really enjoy having Oliver in his office (as seen by the picture above).  Sessions shared he is also a caregiver of a child with special needs as he has a son with Down Syndrome.  It was nice to be able to see Congressman Sessions as a father and caregiver, just as I hope he saw us as desperate parents wanting to make way for a cure.

Outside of asking for the Congressmen to support the EACT, we asked for robust funding for the National Institutes of Health (NIH) and FDA.  Both government departments are crucial to the Cystic Fibrosis Foundation's research for a cure.  The CF Foundation uses basic human research, supported by the NIH, to build upon our own research.  Once a medication is found, the CF Foundation works diligently and swiftly with the FDA to get the drug to market as fast as possible.  The CF Community raises it's own money for a cure but uses help from the NIH and FDA to help expedite a cure.

Another Congressman that we had the privilege to meet was Congressman Bill Flores.  I have met with Congressman Flores for the past 3 years and greatly appreciate his sincerity every time.  Oliver and I are constituents of Congressman Flores and really enjoy having created a positive relationship over the years.  Texas has around 1,744 CF patients and 16 CF Care Centers.  Scott and White, one of Bennett's hospitals, is in Congressman Flores' district.  

We enjoyed meeting with all of the Congressman.  But, Oliver's favorite Congressman is the one best known to him as "Pops."

Congressman Fleming was actually on his way to votes after our meeting with him so he invited his grandson to help him vote on the House floor - something only children get to do. I had to watch from the Gallery.  But here is where Oliver did the most for CF on Capitol Hill and didn't even realize it:

On the floor of the US House of Representatives, Oliver helped his "Pops" vote.  But, between votes, different Congressmen, delighted to see a child on the House floor, came up and spoke with him.  I watched from the Gallery as he shook hands with men and women who represented states near and far.

I knew Oliver wasn't exactly able to capture in his little mind what a cool thing he was getting to do. But I was soaking it up for him, watching from above.  I watched my little first grader speaking with the adults, sitting there in his little khaki's and button up shirt, looking around, listening to the sounds of the gavel being hit and watching the lights brighten up as votes were cast.

At one point, Oliver seemed to unknowingly catch the attention of Congresswoman Debbie Wasserman-Schultz.  This is most interesting because it seems that often the Republican Representatives and the Democratic Representatives tend to mingle together in their respective parties on the House floor during votes.  But Congressman Wasserman-Schultz is a Democrat.  Congressman Fleming is a Republican.

I watched as Congresswoman Wasserman-Schultz came over and began speaking to Oliver, who was standing beside his grandfather.  She struck up a conversation with Oliver and then with Congressman Fleming, who at some point mentioned to Congresswoman Wasserman-Schultz that Oliver was doing something important at the Capitol today - he was advocating on behalf of his little brother, who has Cystic Fibrosis.

I could see there was some sort of agreement going on between the three of them.  But I couldn't tell what.  Later, I learned that during that conversation, Wasserman-Schultz shared with Oliver and Congressman Fleming that she knew what Cystic Fibrosis was.  In fact, she revealed, she has an extended family member with the disease.  And to my surprise, she then turned to Congressman Fleming and said, "Look, I'd love to help.  I'm on Appropriations [Committee].  So, call upon me for any help."

What a powerful moment for me, as a mother, to see my son, on the floor of the US House of Representatives, connecting two legislators who came together, across party lines, in support of those with Cystic Fibrosis.  Oliver had done it.  He had gone to Washington DC, advocated for his brother, and walked away with another fighter, US Congresswoman, in our corner.  I couldn't have been more proud of him.  

Oliver's treat for such a great job: Ice Cream at the US Capitol's Creamery!

I wanted to make sure that I mentioned my friend and fellow CF mom, Rebecca, who became the CF Foundation's newest National Advocacy Chair.  Rebecca and I first new each other only via Facebook through the "CF Mamas" Facebook group.  Now we are real life friends.  It's pretty neat.  I am very proud of having Rebecca in this place.  One of my favorite things Rebecca said during the event was, "CF Advocacy is not political.  It's personal."  This is so true.

At the end of March On The Hill, the CF Foundation invited my dad, Congressman Fleming, to speak to all of the 100+ CF advocates that joined March On The Hill for a dinner.  Senator Markey (not pictured) also spoke.  After dinner, the CF advocates who represented their family members and friends on Capitol Hill shared their stories of the day.  It is always so amazing to hear how receptive our legislators are to our message:  "We are close to a cure.  Help us make that happen faster!"

I am thankful for a father who is not only supportive of his little grandson's daily fight against CF but who is a champion in the United States House of Representatives for all those with Cystic Fibrosis!

And I am thankful for a little 7 year old who advocates for his little brother, not just each day at school and at home, but also in our nations' Capitol.

Sunday, March 15, 2015

Bennett's Story, through the eyes of children

This year, I let Oliver and Bennett tell what it's like for them to deal with Cystic Fibrosis every day.

I was really touched by their sweet comments and how this topic brought up emotions so naturally for the both of them.

To my surprise, both my five year old and seven year old understand cystic fibrosis really well.  Watch Bennett light up at the end when he talks about "all the people."

Help us find a cure for Bennett:

Thursday, March 12, 2015

If I can't have a better MyChart, maybe I can hack the system?

I recently wrote a blogpost about patient portals and how one of the most popular patient portals, EPIC's MyChart, fails patients/caregivers like me.  Part of the main reason MyChart doesn't work for me is because it works around the doctor/hospital's needs and not mine, as the patient.

So I thought I'd share a few of the ways I wish my hospitals' Patient Portal worked better (see below) as well as share resources I've found that go beyond the Patient Portal and allow me to hack the system so I can get better care for Bennett until my hospitals' patient portals catch up.  

Five Requests of My Own MyChart Patient Portal:
1.) Give me initiation access to my clinicians.  I wish MyChart allowed me to contact my clinicians when I wanted to, rather than having to wait for them to contact me first.  Without electronic access, I am forced to call my hospital's answering service.  If I am able to leave a message, the clinician calls me back.  About half of the time the clinician calls me back, I accidentally miss the call, which usually means we play phone call throughout the day and sometimes in to the next day.  How much easier it would be to be able to contact my clinician electronically, at the best time for me AND the clinician can contact me back at the best time for them.  It's a better use of their time and mine.    

2.) Give me access to my health records, including Bennett's X-ray and CT scan images.  By having access to what my doctor knows about my son's condition, I am better able to ask thoughtful questions and have meaningful conversation during our clinic time.  Access to Bennett's records make me a better and more empowered patient/caregiver and gives the clinician more time to do other things as well.  I find it potentially harmful not to have access to Bennett's records because without access, there is a chance that I will miss something that otherwise might be considered or caught.  Although my clinic gives me a paper handout of our CF Care "Action Plan" after ever visit, this paper easily gets lost at home.  Why not have this information online like the way I organize the rest of my life? 
This is the kind of image I'd like access to electronically.  The way I currently hack the system is by taking pictures of Bennett's images from the doctor's computer screen at Clinic.  But there has to be a better way.
3.) Give me trend data on my son's test results.  I wish MyChart showed me how my son's test results have changed over time, particularly with regard to weight.  Weight is such an issue for CF patients.  I'd like to see how Bennett has been doing and study at what points he was doing better or worse to see if there are more things I can do to help him continue to put on weight and stay healthy.

4.) Allow me to pay a bill online.  As is often the issue for patients of chronic diseases, I'm drowning in medical bills.  I'd love to pay online and stop the overflow of bills I receive in the mail each month.

5.) Send me appointment reminders.  My hospital's MyChart sort of already does this.  But what if MyChart actually sent me a Google Calendar or iCalendar reminder that put my appointment right into my calendar?  How amazing would that be?

Since, at this point, my hospitals' patient portals do not provide me this kind of healthcare access electronically, I wanted to share a few resources I have found that are beginning to help patients bridge the gap between what currently exists and what patients like me still need:

Three Patient Portal System "Hacks" I'm Using For Now
This is a phenomenal resource and one I am *so* excited currently exists.  It allows patients to see their own medical records, INCLUDING their x-ray and CT images!!  It's a paid private service that serves the patient and works with the patient's hospital/clinics (all of them!!) to get the data all in one place.  While PicnicHealth hasn't yet optimized their platform specifically for Cystic Fibrosis care just yet, even in it's current state, it's incredibly helpful for complicated patients like Bennett with chronic diseases.  Check out this demo:  

* CareZone

This is a free app that I really love because it allows me to scan my prescription bottles in to the system using my smartphone camera and then keeps all the important information in my app database so that I can always have access to Bennett's up-to-date medication list (such as we often need when I visit a new doctor).  In addition, CareZone has a reminder feature that tells me when Bennett's prescriptions expire and when meds need to be refilled.  I also love that I can indicate through the app when we take a med so that I can actually keep track via percentage of how well we are doing each week adhering to our medication routine.  This tracking helps me focus on the one or two meds that we sometimes seem to forget so that we can evaluate if there is a better time or day or better system at home we could put in place in order to make sure medication is given.

* BetterPHA

This isn't an patient portal but it does things that the patient portal might otherwise do - such as contact my CF care team, set up doctor appointments or reordering meds - and so much more!!  BetterPHA (the PHA stands for Personal Health Assistant) is a service that patients access through an app.  Although the service is not free, BetterPHA seems well worth the price for all that it does. The way that it works is BetterPHA assigns patients their own personal health assistant/live person whose sole job is to make your life easier when it comes to the cognitive burden of healthcare.  The sky is the limit on what BetterPHA can do.  But the things I've asked my PHA to do include refilling meds, scheduling Bennett's CF appointments, requesting records from Avonlea's pediatrician to update her school records, researching nebulizers, adding my family to the Pulmozyme Co-pay Card program and looking in to insurance issues.  BetterPHA is a unique service for both patients and caregivers, CF or not.  I highly recommend!

* SmartPatients

This free website is really fantastic for connecting patients together centered around meaningful conversation.  I am currently a part of a fabulous and very robust Facebook group called "CF Mamas", the one thing the CF Mamas Facebook group can't do is open the conversation up to other patients in similar situations.  So, I really love how SmartPatients allows patients from other communities, such as the IBD/Crohn's or COPD community to share their experiences.  What is it like to raise a child with a chronic illness?  How do you create a Parent Advisory Council at your hospital?  What are the best pharmacies in the area?  These are all questions that could benefit from conversation with a larger community.  

While the two resource below are are not currently accessible to me, I believe both of the following resources offer some really great patient-centric ideas.  One day, if we ever have a CF-specific Patient Portal/Dashboard, this is the kind of stuff, I'd hope it could do:

* iHealthNY - I ran across this website recently and had hoped it was available for more than those in NY but apparently it's a custom-made dashboard for NY residents.  It's not something patients like me can utilize but I think it has some really wonderful elements that I wish CF patients had in a CF Dashboard.  Things I love most about iHealthNY include: access to your health record, quick access to your healthcare team, searchable interface that searches both the internet and your own records, medication information

SolutionReach - I don't know much about SolutionReach except that I came across their video about their service and I think they are on to something.  For example, SolutionReach, a patient portal advertised to medical/dental practices says they allow the patient to check in online (think: no more CF clinic waiting rooms!), gives patients a way to provide reviews on their doctor and clinic experience and access to useful feedback surveys.   Although this video and this service is meant for clinicians, I very much wish some of the elements in SolutionReach were elements I had access to in MyChart.  See their video here:

Monday, March 2, 2015

Why MyChart isn't My Chart

For the average patient, patient portals aren't that interesting or necessary.  But, for those who deal with chronic illnesses like Cystic Fibrosis, patient portals can be extremely beneficial in health care.

Over the last few weeks, I have been working diligently on a number of projects within our efforts to redesign the current CF Care Model.  I have been participating in "environmental scans" of different aspects of CF Care - looking at the current way of doing things and looking more deeply in new ways of doing things.  One of CF care aspects I have been most interested in evaluating is the patient portal system.

One of the most popular patient portals available these days is EPIC's MyChart.  In fact, both of current Bennett's hospital systems (Baylor/Scott and White and Children's Medical Center - Dallas) use the MyChart patient portal.

At the CF Care Model redesign meeting several months ago, discussions began dreaming up ideas for a "CF dashboard" of sorts - a web-based interface that would provide individually relevant information about where we have been, where we are and where we might be going in our CF journey (specific ideas included in a CF dashboard might be tracking patient data, access to medical records, access to CF registry, list of medications, instant connection to our CF docs, etc.).

But, I have found some gentle push back on the idea of a CF dashboard.  Usually, I find those who aren't very interested in the concept will say: "Why would I need something else? I already have MyChart."

Well, I recently thought to myself: "Self, maybe I should list my reasons why MyChart doesn't work for me and why I need more.  So, that's what I did.  In this post, I will list why MyChart isn't good enough for patients with chronic illnesses.  And in a following post, I'll share about some current resources that offer more.  I'd love feedback from others in the CF community or chronic illness community on what works and doesn't work with regard to patient portals and MyChart.

Why MyChart isn't My Chart

1.) MyChart provides very little actual patient health information. 

MyChart allows the doctor/health system to determine what information to release to the patient. While some hospital/doctor systems do release some medical record information, both of Bennett's hospitals release almost none at all.  What good is an electronic medical record that patients have access to if they don't have access to their information?

For example, here's a side-by-side picture of both of Bennett's hospital systems' MyCharts and the information we receive in his MyChart:

It's obvious, there is hardly anything of value in Bennett's MyChart, except maybe his vital signs.  If I would ever want to go back and read about Bennett's clinic visit - what we talked about, what his doctor decided to do in the way of treatment, etc., I would not be able to rely on his MyChart.

The only notes from Bennett's last clinic visit state the obvious: "Patient seen in clinic today."

Since MyChart doesn't provide Bennett's medical records, if I would like a copy of them, I have to contact the hospital and to get a paper copy of his medical records which often takes weeks and costs money to me as the patient/caregiver.

2.) MyChart is poorly organized.  

There is no search feature or ability to find information quickly.  Therefore, I must scroll through all of Bennett's test results to find the one I'm looking for.  Since we have tests at each quarterly appointment, it doesn't take long for that list to be extensive.  This makes it very difficult to compare his test results very easily.

3.) MyChart is driven by the doctor/hospital system, not the patient.

I don't control much of anything in MyChart.  My doctor does.  For example, I cannot send self-initiated messages to my healthcare team.  I can only reply to messages my healthcare team has sent me.

I can get test results, but only some of them, and only the one my doctor initiates.

I can get appointment reminders. And if, and only if, my hospital provides me access, I can create a new appointment through MyChart.

Refills can be requested through the app...but only for specific listed medications, the ones the clinic decides to make available.

I prefer to have a patient portal that is patient-centric, not hospital/clinician-centric.

4.) For every hospital system of which we are a patient, we have a different MyChart.

Bennett has been cared for by three separate CF care centers/hospital systems over the course of his five years.  That means that I have to flip back and forth between his different patient portals.  This is what the healthcare industry calls "a silo" - a separation between two parts causing the inability to communicate.

I do like that the patient portals do allow for multiple patients in the same system.  But, for Bennett, we need one system for all of his hospitals and specialists.
See the red notification under "Heath Reminders?"  To turn off the notification, I have to call my clinic, find the appropriate person and ask for it to be taken off.  Ain't nobody got time for that.

5.) The patient has no ability to input information.

See the little red notification in the image below?  I can't make that go away.  It's a notification on the hospital/clinician's side of the patient portal indicating Bennett needs to get a flu shot or his immunizations - things he got months ago.  But, since MyChart is controlled by the hospital/clinician, the only thing I can do to get that little red notification away is to call my clinic and track down the right person who can click the right button to make that go away.  Ain't nobody got time for that.

It can be very frustrating that MyChart is mainly used by the hospital/clinic to push information to the patient, rather than working with the patient to share information.

6.) Patients cannot sign up for MyChart with their phones.  

They must log on to a desktop version of MyChart first.  This is difficult for patients who don't have access to a desktop/laptop, which is so very many patients these days as most Americans access the internet through their smartphones.

In my next post, I'll share some of the current patient-centric portals that exist that I would love to see accessible for patients, particularly those with chronic illnesses like cystic fibrosis.  My hope for posting this information on Bennett's blog to help facilitate a change for patients like Bennett who need greater access to medical records for better healthcare.

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:

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.