Two Inspiring Moms Day 7

At the heart of the experience of chronic disease, including caregivers as well as patients, there are more similarities than differences. Being included in care decisions, becoming engaged with the heath care system, worrying about clinical trials - all of these are areas where any of us might become involved in the future.

The blog I am featuring is by Erin Moore and is called 66roses. The link is to her blog post about MedicineX, which is also happening this week, and it made me think about powerlessness and hope. She mentions Paul Bataldon saying that hope is the primary motivator for co-production, and talks about Collaborative Chronic Care Networks (C3N) and helping others to find hope and move out of powerlessness. She's doing a workshop at MedX and this post is a great introduction.

A detail from Erin Moore's Walking Gallery jacket, showing the reason she is passionate about Cystic Fibrosis (65 Roses)

Among other great observations she has made in past posts: 

"Patients and caregivers are asked to give up time in their already full and complicated schedules to help out ...healthcare professionals. Meaningful engagement would be asking patients to be a part of the team, recognizing the value that they bring to the table, and showing them that you appreciate them through respect and compensation."

And this post, where Erin Moore and her 5 year old son talk about whether he will enter a research study, which led to her wondering about the idea of making the IRB (document that explains the research and the risks) information accessible to the children in studies. What a brilliant idea!

And that led me to think further about Dr Joyce Lee and her great Personal Design Experiment. This link goes to her slideshow showing the way she became convinced that design thinking would improve healthcare. We also can see the video her 6 year old son made to show his teachers how to use an epi-pen.

 Joyce Lee's son did his own illustrations

He has allergies that can lead to anaphylactic shock so his teachers need to know how to use it. After seeing his video I think we all get it.

You can find great bloggers in social media. Time spent online can have a great payback, and no sooner do you learn something new than you pass it on to others.

It was great through the week to read blog posts from so many bloggers I did not know, as well as old friends whose blogs I read often. Now that we've all met, I'd say let's follow Rick's example and try to comment more often. He's a Comment Star. Nothing makes bloggers happier than comments. 

What Next 2015?

Last year on New Year's Eve I was thinking about my hopes for the coming year - they were simple but seemed like stretch goals that would take five years or more to achieve.

My ambition for 2014 was to be a Medicine X ePatient Scholar and to have a Walking Gallery jacket done by Regina Holliday. Both of those things happened in 2014, and I appreciate and would like to thank my social media and online friends with being an amazing help throughout the year. I'd also like to thank Regina Holliday for her great insight, and for inspiring people to think in pictures.

MedX was inspiring, exhilarating, intense and a huge chance to grow as an advocate and connect with like minded people. The jacket, with great timing, arrived in Palo Alto for the first day of the MedX conference. So much happened in those four short days.

Here's a picture of the jacket - it tells the story of my first years with RA and without a diagnosis.

Walking Gallery jacket by Regina Holliday - It's A Mystery

"It's A Mystery" is inspired partly by my life-long love of mystery books, especially those from the "Golden Age" of mystery. The front covers of the books from that time, and the mood in them is  still unmistakeable. That's the Toronto skyline in the background, with the CN Tower acting as the tent pole, or the beacon.

The doctor is a shadowy figure - if he knew the diagnosis it didn't help me much. 

His final piece of advice: "Take 12 aspirins a day and come back in three months" led me to see another doctor when that didn't help. Regina did a great job of bringing those times to life.

There I am lying on the ground with huge fatigue and two little boys, while my feet are so sore I can hardly walk. At the time I credited Diet Coke with the sudden weight loss. The doctor's explanation for the pain - "You're a busy mom."

This disappointing beginning to a story of life with chronic illness was what caused me to start to question my role as a patient and my relationship with doctors. With the story laid out so clearly on my back, I can use the circumstances of my non-diagnosis as a starting point. One thing I know - If things had gone better when I first had symptoms there would have been no impetus for me to be involved in health advocacy now.

With the story of my disappointment with a failure in healthcare is on my back when I wear the jacket, but that's the starting point. With it as a springboard I can easily talk about the passion I have now for the inclusion of the patient voice in decision making in health care.

Since I've been home from MedX I will swear that the idea of the "MedX Halo" is not a myth. I've been to six rewarding and interesting conferences since then, and have three scheduled for 2015. Working hard to learn more and advance the idea that the patient voice should be included at the decision making level in health care has been satisfying and the rewards outweigh the efforts.

We're a long way from seeing inclusion of patients as a common practice, but if we work together persistently we can advance change. I like this Margaret Mead quote:

"Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has."

In 2013 the National Forum on Patient Experience did not include patients. In 2014 there were many patients. That was a success.

In 2015 there is a conference coming up called Canadian Patient Relations Conference: Making the Invisible, Visible: Hearing the Patient Family and Caregiver Voice. There will actually be one patient in attendance - giving a keynote speech. That should be enough for patients, right?

Being a member of the Society For Participatory Medicine is another excellent way to attempt to keep up with the issues of participatory medicine and patient empowerment.

MedX ePatient Scholars & Student Leaders by @Hurtblogger

The Society for Participatory Medicine is a 501(c)(3) not-for-profit organization devoted to promoting the concept of participatory medicine, a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

The IDEO Design Challenge

The Design Track for ePatients at the Stanford Medicine X Conference this year was an experience that demonstrated the value of teamwork. Where else could you see a cardiac surgeon, a researcher, GP doctors and a venture capitalist working with a patient to find answers to a health problem posed by a patient?

This is the way the challenge worked: two months before the MedX Conference the patients involved submitted problem statements to Dennis Boyle and his team at IDEO; participants got a (helpfully) pared down list back with requests for clarifications. We also received background links about design thinking and a copy  of the book "Creative Confidence: Unleashing the Creative Potential Within Us All".

To start our day at IDEO we had a tour. The company has done amazing work in design and their workplace is full of people doing work that they love. Then we broke up into teams and I presented my 'How Might We' problem statements, that are a hallmark at IDEO. We had a terrific facilitator, Tanya Rinderknecht, who nudged our team back on track when we started to get too ambitious in expanding the areas we wanted to cover.

In design thinking there is much consultation and questioning with the users of the potential solution. The statement the team chose to work on was "How might we convey new symptoms to Doctors and be believed. I find that when symptoms don't fit the mold, it's back to the same round of doctors for the same verdicts and no progress."

Through the intensive questioning, brainstorming, conceptualizing and prototyping the whole team kept on moving ahead and making steady progress. What we came up with as a solution was a patient toolbox. Each team presented at the end of our IDEO day: All five patients involved presented on the main stage at MedX on Sunday, outlining what we learned,  as well as describing our prototypes - everything from a new way of finding your path with chronic disease to a video demonstration of a new online tool.

I was happy to have one of the Tools we devised to demonstrate with me on stage. Here are the signs we made to facilitate communication with doctors in certain situations. (I  would want to have a good relationship with a doctor before I started to use these unexpectedly.)  Doctors could adapt signs like this to use in their practice as a way to enable patients to have more input and better conversations during their appointments. Some issues of concern that seldom arise might then be discussed. With these signs health literacy is not an issue.

Here they are with some short explanations:

Studies show that patients are usually interrupted by the doctor within 11 to 18 seconds. This is a "Please don't interrupt me so soon"

Yes, I am interested in that treatment but what about side effects?

"But doctor I'm in pain. Can you help me?"

"Please slow down. I need to understand."

"Will this affect my sex life?" (a difficult topic for some doctors to raise)

Yes, I'll try this for now, but what about the future?"

"Doctor. You've got it. Thank you."

"Thumbs up on a great job." (Note: This can be turned upside down when appropriate)

You can feel free to copy these pictures for your own signs, or use them as the prototypes that they are. I've already had a suggestion for another sign: A picture of a brain and the words "I have a brain." Feel free to add more sign ideas in the comments.

We also produced a jargon buzzer, a board game to enable goal-oriented planning between doctor and patient, and an the use of an attention getting flashing light that was demonstrated by Dr. Marc R Katz in the most memorable picture of the day.

There he is happily preparing to play the role of a difficult patient. His iPhone acted as a strobe light that would only stop when felt he had a way forward or a level of comfort with the planned treatment.

I was the one who played the Dr as we acted out our prototypes and finally was able to articulate the answer that satisfied him when we had no diagnosis or way forward. Once I said "We don't have an answer for you yet, but we'll work together until we solve this" he turned off the strobe.

Dennis Boyle of IDEO graciously gave the go ahead to post these signs. Our team produced two more tools and the lessons I learned based on this experience were illuminating.

At the end of the day I thought my team was brilliant because our prototype tools to improve communication between doctor and patient were simple and effective. However when I wrote the presentation of our results for the main stage, I realized that the whole team that was responsible for our prototypes,  included the patient. 

That lesson has stayed with me and guided my actions as an active patient advisor ever since then. 

Design in Health

Thinking about design as it relates to health, the skeleton strikes me as a template. It may not be an elegant example of design but we do know that it works and over the short term it can adjust to changes. Even more amazing in the long term it can evolve.

This one is done evolving but still very useful to many

It doesn’t look elegant, it's got too many fiddly bits and weak spots but it is functional and effective. Those two features are essential parts of design.

If we had to construct something else to replace our skeletons it would not look like the replica above. 

With our bones as framework we can influence the way we look to others. With such a solid base lying below our skin and muscles we have many choices about the way present ourselves.

That's one of the difficulties of chronic illness. It takes away some of the possibilities that we may want with great intensity. In my quest for a less stressful life I have (mostly) adapted to the losses. Acceptance has helped me to cope.

I'd bet no one is surprised that there is a study about this very topic.

The process of acceptance among rheumatoid arthritis patients in Switzerland: A qualitative study. The conclusions can apply to other chronic illness but I picked RA for sentimental reasons.

This post is in response to the #MedX assignment on Designing For 

Health, though it meanders away from the topic.