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.
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.
