Design Thinking a Rare Disease to its Death

In late October 2009, I was picked by a disease to become a lifetime observer of Hunter Syndrome, a disease that wants to kill my children. Hunter Syndrome is a rare, genetic disease caused by a gene mutation that inhibits the body from producing an enzyme required to break down cellular waste causing it to build up in an effected person’s vital organs leading to an early death in the 1st or 2nd decade of life. Every day since I’ve plotted this disease’s death, and pictured my children somehow thriving. Little did this disease know it was picking on the family of a design thinker, a mother with over 21 years of experience in the tech industry, an optimist, a chronic over achiever, and a problem solver. In my 21 years of Tech experience, I have learned and used a remarkable amount of tools, methods, and ways of thinking; and I am not talking about software. I’m talking about Sigma, Vision Maps, Agile, Design Thinking, Qualitative and Quantitative analysis, troubleshooting techniques…I could go on and on. Every year I learn something that helps me to begin to complete the puzzle, and add one more tool to my tool box waiting for the opportunity to deploy it. Recently, classes at Stanford’s Center for Professional Development focusing on innovation and entrepreneurship helped add some tools that bolster what I was already doing in my career. It’s in those studies that I realized caregivers can be natural design thinkers. In the role of the caregiver or the parent, we’re using these tools to design think a rare disease to its death. Design Thinking puts the human at the center of design. In my experience as a parent of two children with a rare disease, we’re instinctually putting our children at the center of design.

Empathizing and Observing

This rare disease has anointed me a lifetime pass to empathy and observation in a multitude of environments. I see everything. Sometimes I sit quiet, sometimes I ask questions, sometimes I am doing things to help, sometimes I talk and educate, but most of the time I am listening. This role allows you to take in a lot about your surroundings; the challenges of the people involved in care, the industries and various parties involved, the systems and process, and the obstacles. Observation gives us the ability to understand what problem needs focus and attention, and ensure we’re focused on the right problem. We spend so much time in a variety of environments, and engage in dialog with so many different roles many of whom will offer their specific challenges and their point of view. As the Design Thinking Caregiver it’s up to us to sort out the opportunity from the backburner concepts, and move some of those concepts forward. In a given year, we’ll meet physicians, pharmacists, healthcare leadership, researchers, students, parents and caregivers of other patients with other diseases, therapists, teachers, academic administration, inventors, writers, etc. From these interactions there is always a takeaway, such as from a Cancer Patient’s Mom learning about how to explore alternative therapies, and nutrition to influence the outcome of the disease and learning how to cope with the possibility of early death. We bear the enormous weight of knowledge and experience in some of the most heart wrenching and desperate of situations. It is that knowledge that makes us desperate for solutions.

Defining and Prototyping

Very few rare diseases have a treatment; it is estimated by Global Genes and the EveryLife Foundation that “95% of rare diseases do not have an FDA approved treatment”. Very few rare diseases have a treatment that is as efficient as nature and the human body. Treatments can rarely address all areas of the human body that the disease effects. What’s an example of this? Some treatments have molecules too large to allow the blood brain barrier, a natural protection mechanism in the brain, to pass the treatment through to treat the brain and central nervous system. Additionally, no rare diseases have a cure. So opportunity is all around us; and in searching for solutions we develop the most difficult user stories, use cases, and descriptions of problems to solve. These stories are shared in blogs, to physicians, to researchers, to regulatory organizations and to the associations that advocate for our diseases. These stories become the foundation for searching for solutions.

In the absence of a solution, caregivers and parents are prototyping solutions to our problems. Prototyping of solutions range from one extreme to another from starting your own biotech company, a non-profit to fund research to adopting alternative treatments that are generally available such as nutrition, supplements, essential oils, oxygen therapy, light therapy, and on and on. In the absence of a treatment, we’re prototyping solutions, observing the results, and noting the trial and error. Parents and caregivers get educated quickly and create roles for themselves. Frankly it’s hard to stay away from being part of the solution.

We’re solving problems that revolve around the central problem of the disease. They’re big problems; such as how to educate a child with such a disease, how best to achieve optimal health, how to keep these children safe by engineering solutions to their physical environment such as their bedrooms.

When presented with new challenges, we ask ourselves what has changed, and what brings this new challenge to light? In the presence of solutions, we’re thinking about how we can improve those solutions. How can we reduce the number of needle sticks our children get? If they are stuck with a needle, how can access be more accurate? On the topic of port infections, when many of our children are young and teething and get fevers regularly, could a home pre-test kit looking for indication of infection be possible?

We solve every day problems too such as how do I keep my child safe? How do I ensure someone who doesn’t sleep stays in his or her room at night? The ideas and scope of problems are at times boundless but many find temporary solutions until something better comes along.

Life-cycling for Life

Those involved with caregiving know that it is a lifecycle. You are revisiting, revising, identifying the problem, and trying to work on the right one. When we are developing prototypes, scraping what doesn’t work, collaborating, and solving, whether we know it or not, we’re using design thinking. You’ll see us on your boards, your panels, your committees, in your surveys, and in your halls advocating for solutions and showing you the problems seen by our eyes, heard by our ears because for us, it means everything to have a solution.

Test my comments, engage a caregiver or parent. See what he or she has to offer. Design Thinking could be just what rare disease needs with intense collaboration pushing to macro and micro solutions that could even result in disruptive, innovative results. To that end, we need to come together and be committed to the life cycle of revisiting and revising using Design Thinking keeping our most precious humans at the center of design.