A Taste of MedX - Presentations From 2016

Stanford MedicineX is one of the most intense immersions into the future of patient centered healthcare and patient advocacy that you could imagine. Here are just a few of the awesome presentations that we experienced at the 2016 conference. I could write an entire post for each video, but it is best if I let the folks speak for themselves.

Other than Dr. Chu's opening and closing remarks, these are in no particular order. I just grabbed them off of YouTube as I came across them.  I do have to say that Dillon's presentation is one that change 'me', and that others listed here have become personal friends.

Give them a watch, this really is just a "taste of MedX"

Dr. Larry Chu - MedX 2016 Opening Remarks

Dr. Larry Chu welcomes the mainstage audience to the first day of Medicine X 2016

Dillan Barmache & Debbie Spangler: 

Everyone Included - Precision Medicine Initiative

With some aid from caregiver Debbie Spangler, ePatient Dillan Barmache discusses his experiences living with Autism and makes an appeal for revising treatment for individuals with Autism.

Terry Marlin: Fighting Duchenne Muscular Dystrophy

I am 41 years old and I have been married to my wife, Sonya for 16 years. We have 2 boys, Jonah is 12 and Emory is 10. I own a small manufacturing company in Dickson, TN. where we manufacture carbide and diamond tools. Our 2 boys were diagnosed with Duchenne Muscular Dystrophy in 2009, which is why we started FightDMD in April of 2010. We have currently raised $750,000 to fund cardiac research at Vanderbilt Children's Hospital for kids with DMD.

Britt Johnson: Special Session - The Opioid Crisis - Presentation

Patient advocate Britt Johnson discusses her history of chronic pain caused by rheumatoid arthritis, and how taking opioids has helped her to live with that pain.

Liz Salmi: Oral Ignite

Patient advocate Liz Salmi discusses her experiences living with a brain tumor diagnosis and how her family history with the disease has informer her decisions.

Sophie Thacher: ePatient Ignite! - Healthy Enough

Sophie Thacher talks about her personal medical journey and how people can move beyond "healthy enough."

Yoko K. Sen: Artist in Residence

Yoko Sen tells the story of how her own experience in hospitals and hearing the needs of other patients led her to her work in creating better sound atmospheres for hospitals

Natalie Abbot: Sharing is Curing

ePatient scholar Natalie Abbott discusses her experience living with Moebius syndrome and the importance of a supportive community for people living with genetic conditions.

Danielle Cosgrove: TheProject3x5

...So, in short my mission is to advocate, educate, empower, and maybe even inspire those with CRPS/RSD, chronic pain, and nasty little invisible illnesses in general. Follow along at theproject3x5! Join my cause and spread the word.

Julie Cerrone: How I used social media, patient advocates, and my own research...

This presentation would talk about my health journey and how having access to my data, using my data, and fielding my “dream team” or doctor has helped me get to where I am today. My case study proves that we need precision medicine to combat these complex health issues.

Larry Chu, MD: Curtain Call & Closing Remarks

Dr. Chu delivers closing remarks commemorating the end of the Medicine X 2016 conference

There are many more wonderful presentations from MedicineX over on their YouTube Channel.

Followed by a Photojournalist

Early Saturday Morning at MedX I received a text from our ePatient coordinator asking if I would mind if a photojournalist followed me around for a bit.  Of course I said yes and met up with Michael in the hotel lobby.  It was an interesting experience, and I really couldn't help but laugh when he asked me to pose.  One of our granddaughters is doing some modeling and I thought of how funny she would think my posing was.

Michael did make me feel comfortable, and had a very interesting story. Freelance photojournalist sounds like a very cool job, and not many have to eye to capture moments that can inspire a movement or catch a piece of history as it happens.

Here is one of the images that he caught of me:

I think he did a very good job.

More interesting that getting my pictures taken, was talking with Michael about some of his work and some iconic images that have become a part of societal genetics.

You can find more of Michael's work here.  Go ahead, click it, you'll be glad you did.

Stanford MedicineX Moments - #MedXMoments

How to write a post that includes all of the wonderful, intense, special and enlightening moments that were a part of the Stanford MedicineX experience is a question I've been pondering for days.  As you'll soon see, I still don't have a good answer.  There is no way I can possibly include every person, encounter and presentation that touched me over those very special four days.  So I've decided I'm not really going to try, but it is important to share some of the highlights.

One thing that really impressed me about the MedX team is just how much care they took to understand all of the ePateint delegates accessibility needs. And even more impressive, are the length they went to meet our needs. They really do take the idea of Everyone Included  very seriously.

I probably should start with the flight out to San Francisco. Want to be left alone on a flight? Wear a face mask and carefully sanitize everything you may touch around your seat.

It is always interesting, the reaction you get when wearing a mask in public in the United States. When you have a compromised immune system, you do what you can to protect yourself, or you end up in the ER burning with fever and hoping you got there early enough to prevent a trip to the ICU.

Day 1 was the IDEO Design Challenge. I commented on that day earlier this week so won't spend much time on it now. One cool thing, for someone who spent 13 years in the Navy, was the chance to speak with Rear Admiral Lane.

Friday began bright and early with a nice breakfast on the lawn outside the Li Ka Shing Center at Stanford University.  Dr. Chu opened up the conference and we were off.

The main stage presentations and panels were livestreamed, and I hope recorded.  I would very much like to revisit some of what I experienced at the time, and to see presentations that were on at the same time as some of the breakout sessions and workshops I attended.

Here is Dr. Chu talking about precision medicine.

One of the most powerful presentations of the weekend was by a young man named Dillon.  Dillon has Autism and communicates by typing out his words either on the computer or with a letter board.

Early in life Dillon couldn't communicate in a way that we understood. Dillon's presentation about how he was treated when the doctors, and pretty much everyone except his parents, assumed that he did not comprehend what was going on around him was both heart breaking and inspiring. I really hope that his presentation shows up somewhere, it was the one that affected me most.

Here he is on the panel discussion following his presentation:

 

Stanford MedicineX IDEO Design Challenge - #MedX Day 1

My time spent at Stanford MedicineX 2016 was probably the most intensive, fully immersed, four days I've experienced in decades. I'm still digesting the experience. I need to start putting my thoughts down on paper, it will help me process all the data I've ingested.

My first day at #MedX was Thursday, and it was spent participating in the MedicineX - IDEO Design Challenge.

Stanford Medicine X is once again joining forces with Palo Alto-based firm IDEO to offer ePatients the opportunity to collaborate with designers, researchers, technologists and health-care providers to spark new ideas for improving patient care. Participants in last year’s Stanford Medicine X | IDEO Design Challenge called the workshop “a very healing process” and praised the experience for allowing creativity to “flourish and grow.” 

 At the day-long event, participants will be divided into teams and each group will include an ePatient who has experience managing a chronic disease and who uses technology to help facilitate his or her own care. Using a problem statement based on the ePatients’ chronic illness and application, the teams will work through the design-thinking process to develop potential solutions.

First, do you know who or what IDEO is? Well, if you are reading this on your computer, you probably have a mouse under your fingers while doing so.  IDEO designed the consumer versions of both the Apple and PC mouse.  IDEO continues to be on the cutting edge of design in pretty much every sector of the economy. The opportunity to spend a day in a workshop led by Dennis Boyle, a founding partner of IDEO, is, well... if I had known this was a possibility it would have been included on my very short Bucket List.

The MedX IDEO Challenge really is centered around the patient, and what we believe is lacking in the technology needed to manage our health care issues.

Stanford MedicineX - First Thoughts

I made it home from Stanford MedicineX 2016 yesterday. I spent four days in Palo Alto at Stanford University participating in this "Everyone Included' medical conference. I planned on writing about my experiences there pretty much as soon as I got here, but wow, I was pretty drained.  Still recovering from four days of 12+ hours a day of intense discussion, active listening, participating and advocating.

One thing I learned quickly is that I really suck at live blogging an event.  I gave it a quick shot, but couldn't blog and participate at the same time.  I became very involved in pretty much every forum and panel that I attended, trying to soak everything in and experience everything that was going on.  Here is an image that I found that was taken sometime on the 4th day of #MedX.

Another thing I learned is that after awhile, this much focus will trigger an increase in some the noticeable side effects of my medications. Somewhere during Day 3 the tremors started becoming more noticeable and it took me a bit to try and eat lunch and look mostly normal.  I know I was in the one place where many would have understood and few would have really noticed.  I still don't like to look like I'm having a hard time getting my fork to my mouth.  Another side effect that really gained intensity as the weekend progresses was what I consider my film. It feels like there is a barrier between me and what's going on around me.  I guess it's kind of like brain fog. Everything is vibrant inside my head, but what I experience of the 'real' world seems dulled.  I hadn't really notice that until earlier this year when my immune system totally shut down and I ended up in the ICU.  They had to take me off of a couple meds and significantly reduce others until my system rebooted.  I was extremely ill, but felt awesome. As I resumed my meds, the film came back.  I spoke with my Team about it and they agreed that it was a side effect of what I am taking.  Now don't get me wrong, it's not horrible and all really is well.  It's just that when it gets more intense, I have a harder time expressing myself and it takes a little longer to process conversation.  The team at MedicineX tried to think of everything and provided a "Wellness" room for just such occasions.  I spent some time in there plugged into my Pranayama App doing 8 second box breathing.  That really helped and I was able to get back to it :)

Speaking of side effects... I've mentioned at some point in the past that at some point in my journey with Idiopathic Pulmonary Fibrosis (IPF), I lost the ability to do much in the way of math in my head. Math was very important to me, and I still hold out a little hope that it'll come back.  I was talking about this loss and found someone else with the exact same issue.  We both loved math and were doing advanced math early on, we both now have a hard time doing the simplest math in our heads and have to double check everything, and our neurologist both don't have any idea why.  We've had the same tests, with the same results, and the same conversations with the brain docs.  It was pretty intense finally being validated, that it really has happened, and that someone understands.  We are each the first one we've ever met who share this issue.

I had a totally different title to this post, but it went a bit sideways. Hope you don't mind.

A post actually about MedicineX will be written soon.  I promise :)

Pulmonary Fibrosis Related Medical Device Ideas

Next month I will be attending the Stanford MedicineX IDEO Design Challenge as an ePatient. We will be working in small teams with some of the leading innovators and medical device manufacturers in the country. The awesome part of this event is that the design ideas for this challenge come from the patients.

I have a few that I think are important to put forward, and I'm kind of using this post to solidify them in my mind.

As Idiopathic Pulmonary Fibrosis (IPF) progresses, the need for supplemental oxygen increases.  An individuals oxygen requirements vary depending on what they are doing at the moment.  2 lpm may be good while sitting on the couch, but 4 or 6 lpm might be necessary to walk around. Blood oxygen saturation can drop rapidly if the oxygen flow is not increased when  exertion changes.. When we need more O2 to walk than we do to sit on the couch, it is difficult to maintain the proper flow when the machine is in another room.  We either have flow turned up too high and move the cannula down on our lip while we are sitting, or we let our sats drop when we go to the restroom or off to bed. Leaving the flow too high is noisy, dries out the nose, and increased electricity usage. It would be very helpful if we had a means of adjusting flow remotely instead of having to go to the machine to do so.

Using oxygen to keep your oxygen levels over 90% 24 hours/day (90% 24/7) is one of the most important things a person can do to keep healthy if you have Pulmonary Fibrosis. As I mentioned earlier, oxygen levels can drop quickly as exertion levels change. We do not currently have a means of efficiently continuously monitoring blood oxygen levels.  We can spot check with a fingertip Pulse Ox, but wearing a device on your fingertip all the time is not reasonable. Plus, the devices I've used do not have alarm set points to let the wearer know when their oxygen levels get low. We need something that would allow a PF patient to continously monitor their blood oxygen saturation, and alarm when it got to a determined set point so they could titrate their oxygen flow rate. This is a quality, and, length of life issue.

As important the use of supplemental oxygen is for someone living with Pulmonary Fibrosis, many will not do so in public.  They either stay home, or go out and about without their oxygen. Neither one of these is good for the patient. We need to be social, walk around, be a part of life.  And we need to keep our oxygen saturation up while we do so. There should be a way to help people feel more comfortable being in public while using oxygen.  I don't know if it is improved O2 delivery devices, a public service campaign to help make it more socially acceptable, a more unified positive approach to prescribing oxygen, or just what it is we need to do.  But we do need to do something.

Speaking of being comfortable in social situations, lung transplant recipients need to wear a face mask quite often while out in public.  The anti-rejection medications that we are on compromise our immune systems and preventing infection is a very high priority is we want to stay healthy and protect our lungs. One important tool used to prevent infection is a procedure mask. We should wear one when out in public during cold/flu season, around kids, at the doctor's office or hospital, and pretty much anytime where we might be exposed. You would not believe the comments I've heard from idjits while out and about. These comments don't really bother me, but they do others and the mask gets left home.  Another issue is that I see a lot of people improperly wearing their mask.  Not covering your nose pretty much renders the mask useless.  Again, I'm not sure how to fix this issue, or even which direction to go when addressing it. 

Another idea for something that could make life easier for many people is to find a way to make taking pill/tablet meds easier while on a feeding tube.  I was on a feeding tube for a few weeks post-transplant and the routine of crushing and mixing my meds 6 times/day was quite the pain. You would think that something could be done to make this easier.

Over the next few weeks I will be boiling these thoughts down into shorter "How Might We.."design problem statements.  I'll be working with a team to determine three to put forward at MedX, and the team there will decide upon one to work on. I'm still in the brainstorming phase and hopefully will come up with a couple more possibilities to add to this list.

During the weekend I will also promote the idea of making a pulse ox similar to a blood glucose meter, a device that is covered by insurance and prescribed to all diabetes patients.  Knowing blood oxygen levels is just as important for a PF patient as blood sugar is for a diabetic.

Do you guys have any other ideas that you would like for me to put forward at this event?

Monday Morning Edit:

Here is a list of the eight "How Might We..." questions that I've come up with so far -

1 . Pulmonary Fibrosis patients, myself included pre-transplant, have rapidly changing blood oxygen levels based on exertion. Often oxygen levels can drop below a safe recommended level without the patient knowing.  How might we provide a means of continuously monitoring oxygen saturation and letting the patient know when it is low and requires action?

2.  Pulmonary Fibrosis patients, myself included pre-transplant, titrate their blood oxygen levels by adjusting the flow of supplemental oxygen.  At moderate and more advanced stages of the disease, the required oxygen flow rate can more than double when going from sitting on the couch to walking to another room. Oxygen concentrators are noisy, hot, and usually located in a remote room. How might we help patients adjust supplemental oxygen flow without having to physically go to the concentrator?

3.  How might we make it easier, and more socially acceptable, for someone to use supplemental oxygen while out in public?

4.  Lung transplant patients, myself included, are often placed on a feeding tube for a period of time following the procedure. We also have to take a large number of medications throughout the day. How might we make it easier for a patient on a feeding tube to take pill and tablet form medications?

5.  How might we make it easier, and more socially acceptable, for patients with a compromised immune system (myself included) protect themselves from airborne infection causing agents while out in public?

6.  Patients with a restrictive lung disease, myself included pre-transplant, have much different supplemental oxygen requirements than those with the more common COPD and other obstructive diseases. How might we educate the general medical field on these differences?

7.  Pulmonary Fibrosis patients, myself included prior to transplant, use a fingertip pulse oximeter to monitor blood oxygen saturation. This is as important to the health and well being of a Pulmonary Fibrosis patient as a blood glucose meter is to a Diabetic. How might we help to ensure that all Pulmonary Fibrosis patients have access to a Pulse Ox?

8.  Pulmonary Fibrosis patients with advanced disease, myself included pre-transplant, often require high and continuous flow oxygen.  Working with insurance and oxygen delivery companies can be difficult. How might we help patients gain access to efficient, high flow, oxygen delivery systems?

The team will pare this list (plus any new ideas) down to a list of 3 ideas to bring to the design challenge.  From there, we will choose one to work on at the challenge.