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.
Now, I have to admit that I had an agenda going into the workshop. I knew what we needed. I knew how it could be accomplished, and I was looking for ways to get Tech involved in developing my ideas. That kind of thinking would not take us very far in an IDEO design challenge.
As the patient experts, we were given pre-workshop homework to help prepare for the challenge. There was some reading on general design and the IDEO design process (I learned that an IDEO concept was being used at my hospital to help improve the quality of information exchanged during nurse shift changes, pretty cool that), and to come up with a set of "How might we..." questions to present to our small groups.
Dennis and Dr. Farzad Azimpour (Bio-engineer and Cardiologist, cool right?) worked with us to help reevaluate our ideas of the design process and narrow down our "How can we.." questions to what is most important to the people we are trying most to help.
My ideas changed several times during this process and I was able to set aside my preconceived notions and prepare for the workshop with an inquiring mindset. I finally settled on three questions to present to my group:
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 point without the patient’s knowledge. Also challenging, is the fact that PF patients titrate their supplemental oxygen to maintain SATs. Oxygen concentrators that supply in home O2 are noisy, hot, and usually located in a remote room. How might we provide a means of continuously monitoring oxygen saturation, let a user know when it is low, and allow them to remotely adjust the oxygen flow?
2. Many patients who have to wear devices on their faces for health reasons simply refuse to do so. How might we make it easier, and more socially acceptable, for someone who uses supplemental oxygen or has to wear a face mask to protect themselves from infection, do so while out in public?
3. 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 the same access to a Pulse Ox as Diabetics have to a glucose meter?The team I was paired with included an awesomely diverse group of people. We had representatives from GE Ventures, a patient centered non-profit, England's National Health Service, a Chief Medical Officer of a health care system, a young doctor from here in the US, and a Dermatologist from Brazil. This is when my mental note taking started to fall apart :) Just leave it to say that I was part of an awesome team.
After introductions and a quick tours of the IDEO facilities (a blog post all on its own), Dennis gave a presentation on the IDEO process and got us started in our smaller groups.
We began the small group design challenge with introductions and examples of good vs bad design. My good design example was the Masimo iSpO2 pulse ox, It is accurate, continuously logs data while in use, and exports that data so your can use it in charts. My example of bad design is the iHealth Pulse Ox that is still sold in the Apple Store. The worst part of the iHealth device is that it is worthless out in the sunlight. This is probably another topic worthy of its own post.
Then we began the design process. I shared my "How might we.." questions and we boiled them down into one issue. I thought I had kept that sticky note, but it got misplaced sometime between then and now. Basically it morphed into "How might we monitor blood oxygen saturation, automatically adjust supplemental oxygen flow as needed, and provide a better and more socially acceptable method of supplying portable supplemental oxygen and infection protection". That's not the exact wording, or probably even really close, but it is the gist of what we worked on. Then we started freestyle brainstorming. Sticky Notes and Sharpies led the charge. We came up with a ton of ideas, there were no boundaries to what we could come up with.
We thought of everything from developing an invisible force field that attracted oxygen from the atmosphere, or a miniature heart/lung type machine, to getting celebrities like Ellen involved in wearing supplemental oxygen and procedure masks in public. Here is after we arraigned our notes into categories and were discussing what our project should entail.
We decided that our project would include a very thin-profile fingertip pulse ox connected to a wrist worn device and the oxygen supply. Instead of tanks, the oxygen reservoir would be a wearable vest/hoodie made of a high enough tech material to handle the pressure associated with compressed oxygen. The oxygen generator would also have to be redesigned to be smaller and higher flow, much higher flow to allow for all supplemental oxygen needs. Futuristic I know, but every great innovation begins with a crazy idea.
I learned that the final design that we came up with is not nearly as important as the process we went through to get there.
Everyone involved in this IDEO design challenge was truly interested in learning what the patient needed to better live with their individual issues. Some very important realizations came out of this time we spent together.
There really is a social stigma to using supplemental oxygen in public. This stigma does make it difficult for some to use supplemental oxygen in public. People do hide their supplemental oxygen use by either staying home, or just not using O2 in public.
A doctor in our group came to the realization that he had been supporting that stigma in his daily practice. He used the potential of supplemental oxygen use as a threat to try and change behavior. The ol' "If you keep doing (insert unhealthy behavior here), you will end up on oxygen. You don't want to be on oxygen do you?"
Another member of the team came up to me later in the MedicineX conference and told me that they had spoken with colleagues about the need to monitor blood oxygen sats and the colleagues reaction was "Why do they need to monitor that? We tell them how much oxygen to use, that should be good enough".
Acknowledging these issues, by members of the medical community, is the first step to change.
After deciding upon our design project came the prototyping. This is when all the silliness occurred. I've shared these images of our prototyping results with friends, and they really can't believe that it's me in the pictures. This workshop has taught me that having fun and inserting a little silliness is an important part of the design process. I wonder what I could have accomplished in my career if I had understood this earlier.
As part of our presentation, we prototyped a 'blingy" vest and mask. What we came up with is an over the top expression of that idea. It was fun watching everyone get involved in this project and put everything together.
We also prototyped a version of an Apple NosePod based on the new EarPods idea. That would be way cool. We used modeling clay and pipe cleaners for that one.
The silly mask made it home with me and in on my office shelves of cool things. Here I had it on the fridge.
Yes, we had a lot of fun, which made a long day pass quickly. We did get a lot accomplished and I do believe that our needs for much better supplemental oxygen delivery, and a better way to monitor our blood oxygen saturation, are understood by some in the medical community. These are folks that can help make a difference.
I don't yet have the complete video of our presentation, and I will include it when I do. If you are following along on Twitter (@JRost_), you'll be able to see it as soon as I get it. I do have the first part of our presentation. This was recorded by one of my awesome teammates (Navita Dyal) while we were sitting around the lunch table talking about PF, transplants, and life in general. She really did an awesome job of putting this together, and I appreciate her efforts.
If you are living with PF, or any one of the more than 200 types of PF, please know that these four days of immersion in MedicineX were spent advocating for your needs, educating on your rare disease, and talking with a lot of people about the devices you need to better manage your health. I highlight the work "your' here because you are important and I want you to know that I was thinking of you as part of us the entire time I was there.
This is just the first post of a few I have planned covering #MedX More to come shortly.
If you are interested, here is a photo gallery of everyone at the IDEO Design Challenge. Yes, that really is Rear Admiral Lane talking with me in one of the first images.