Human-Centered Design, Disease 2.0 and the Medical Detective

I’m a human-centered designer. I love to uncover intriguing problems faced by an individual or group of individuals and design solutions to solve those problems.

I’m also a human. I face problems on a daily basis. Some big, some small. But rather ironically, I find it incredibly challenging to design solutions to solve my own problems.

Recently I faced a very big challenge that I needed to overcome. It came in the form of some serious health issues (read more about my journey in this blog). When faced with this problem, I went into blame mode. I blamed the doctors for not being able to cure me of my physical pain; I blamed Google for telling me that I had an obscure tropical disease that would inevitably end in a long, slow and painful death; and obviously I blamed my bowels for all the trouble they had caused me over the years.

A productive way to solve my problem? Perhaps not.

It was at my lowest point that I had an idea. What if I could design my way out of my own problem? I love unpacking other people’s problems, so why not apply this approach to my own? With a rush of energy and enthusiasm, I sat down and mapped out my own human-centered project. I was specifically interested in exploring how people coped with symptoms and syndromes that the medical system doesn’t treat effectively such as chronic pain, chronic migraines and autoimmune syndromes.

The project took this form. I interviewed a number of different people for 60–90 mins from the following groups:

  • Patients who have suffered from some form of autoimmunity.
  • Doctors and providers from both the traditional and integrative sphere.
  • Care givers such as friends and family (I even interviewed my mum which is NOT good HCD practice because I’m emotionally attached to her story. However, it turned out to be the most powerful interviews of the project as I took the time to listen to her story of caring for my dad as he battled cancer and then me as I struggled with Crohn’s disease. I have since gained a much deeper sense of gratitude for everything she has done to selflessly care for others).

As I interviewed these people I kept audio recordings, wrote notes and then slowly synthesized my findings. What I discovered was fascinating.

Disease 2.0

So many people suffer on a daily basis from various emotional and physical symptoms such as stress, anxiety, lack of motivation, chronic headaches and stomach problems. Yet until these symptoms turn into a diagnosable disease, we tend to ignore them. We downplay the impact they are having on our lives.

The reason why we ignore these symptoms is that as a society, we have built our understanding of health around the concept of the disease. If we have a diagnosed disease, we seek help and get treatment usually in the form of pills. If we don’t have a disease, we ignore our symptoms and let them linger. But the physical and emotional pains we face on a daily basis are complex and in order to better understand and treat them, we need to look beyond the traditional concept of disease towards a new evolved understanding of health and wellbeing — let’s call it disease 2.0.

Thinking Outside the ‘Medical’ Box

There is a growing number of practitioners and patients who have embraced the concept of disease 2.0 and are thinking outside the ‘medical box’ when it comes to diagnostic tools and treatments. Some of the ideas they are hacking together are incredibly creative and inspiring. Here are two great examples:

  • Two guys who had suffered from health problems that western medicine couldn’t diagnose were building a genomics tool to uncover insights into their own genome. The tool would allow them to see their top 5 bad genes and then explore what they could do to fix these genes. Check it out here.
  • One doctor at UCSF has created a nonprofit called Communitas that teaches pediatric patients and their parents mind-body medicine. She has ambitious plans to set up wellness weekend retreat centers across the nation. I feel incredibly lucky to be involved in their 2016 program!

When you start looking outside the medical box, there are so many exciting tools that we can create to help treat disease 2.0.

The ultimate medical detective

The Medical Detective

In the past, we have divided the medical ecosystem between those that have medical knowledge (practitioners, PHDs, research scientists) and those that don’t (patients). In today’s society where the concept of disease is so complex and science cannot yet provide definitive answers, we are starting to see the breakdown of this divide.

Patients are increasingly turning into ‘medical detectives’; they are exploring their own genomes, microbiomes, metabolic pathways and mind-body connections. Despite not having any professional initials to their names, they are pushing the boundaries of science. Just think of the insights we could uncover if researchers, practitioners and this new community of medical detectives teamed up to explore the human body, mind and spirit! This discovery in itself gave me an incredible amount of optimism about the future of healthcare.

Conclusion — Designing your own Community

Through using human-centered design techniques to unpack my own problem, I had uncovered some fascinating insights about health and wellbeing. I had been introduced to new diagnostic tools, creative solutions and emerging ecosystems. But the most fascinating insight was, ironically, also the most simple.

I realized that I’m not alone.

It’s interesting that one person with one big problem seems very scary. Two people with a similar problem seems less scary. What I discovered through my project was a whole community of people thinking creatively about how to solve a problem we were collectively facing.

For the first time in awhile, I felt optimistic and excited about the future! We can do this, we will do this, because we are all in it together!!

So here’s my take away. If you are facing a problem in life, instead of toughing it out on your own, try reaching out to others. Develop your own human-centered design project, or simply seek out conversations and force yourself to be the listener and not the talker. There are always other people out there tackling the same problem as you are and they will provide amazing insights and support. If you don’t have a community available to support you, design one.