WHY I WALK AROUND THE WORLD WITH MADIBA
In 2015 I was able to present at one of the most prestigious digital health events in Europe, Doctors 2.0 & You, representing South African patients. My stage presentation focused on how emerging technology will transform facial surgery and my workshop class focused on how a country like South Africa could benefit from digital healthcare and emerging medical technologies. I have no idea how I accomplished this, especially as a patient. I’m not a highly qualified physician or a politician or a genius IT-developer, I’m just a regular person who wanted to make a difference and did everything I could to get my story heard by getting onto social media.
“I walked around the world with Madiba from Paris to Abu Dhabi to New York and one thing remained constant, in some of the most diverse cities in the world, every person related to the story of a South African man who persevered through adversity because he was driven by a vision of liberty for all humankind. In the end, through that perseverance he achieved freedom.”
On stage, I wore a shirt with a print of Mr Mandela (Thanks to Sun Goddess South Africa). I deeply felt that it represented the message I believe in for diversity and inclusion in terms of facial differences and how patients who suffered from disfigurement often experience social exclusion based on their appearance and very few clearly defined disability rights. The second reason I chose to wear the shirt, was to encourage freedom of expression in terms of being able to share our stories without fear, which is what I as a patient felt when I first came forward to advocate online. The third reason I chose to highlight the values of Mr Mandela, was because of how he played such a historical role in the global fight to find liberty in terms of our human rights, healthcare being one of them. Mr Mandela has always been a role model to me for many reasons and I am proud to say he was from my country like an American would be towards the symbolism portrayed by the statue of liberty in terms of their history. Mr Mandela was a visionary.
When I was 19 years old, I started my advertising business called Artext. I didn’t have much except an idea, a paintbrush and R500 in my pocket. I had just graduated from design college and I couldn’t get a job at an agency because I had no working experience. I decided that I wouldn’t let it hold me back from making a success out of life and I started creating my own opportunities. I found people like Steve Jobs, Stephen Hawking, Erin Brockovich and Nelson Mandela being incredible role models for me. The main reason was because their adversity lead them to something greater. Steve Jobs as an example had only obtained a high school level education but because of his entrepreneurial persistence he became one of the world’s greatest creative geniuses. I found that very inspiring, because it reassured me that it was possible to succeed if my attitude was right. I think people often associate success to an academic qualification and forget that some potential is based on talent, talent cannot be taught and it is often underestimated. It is in my opinion why the word “underdog” exists. Talent retains undeniable value in our economy.
7 years after establishing Artext, I was very ill for long periods of time for a decade from a car accident. On some occasions I found myself fighting through the night to survive as well as having to face a society who judged me based on my disfigurement. I decided again during this experience that I would not let it stop me from pursuing the original dream or model me into a stereotype that society expected me to be. My life had to find balance between illness, dealing with disfigurement, growing a business and being a mother in a country with limited support.
How does creativity and adversity improve entrepreneurship?
I label myself an entrepreneur. I define that word in a number of ways, firstly I persevere, even through adversity and I use my ideas to imagine solutions to the issues that present themselves as obstacles in my life. I accept that some of my ideas may be outrageous to others, but I allow myself the benefit of the doubt to imagine and pursue those crazy ideas anyway. I am an entrepreneur because I have a vision and I have the passion to persevere towards it. I am always open to learning and I try to absorb knowledge from every encounter. I gather resources and build my reputation by networking. I have been fortunate to be appointed as an ambassador for Doctors 2.0 & You and to meet such incredible people who are revolutionizing global health. The congress has given me the opportunity to learn about science-fiction innovation from diverse perspectives which is very important to my country that is not close to that level. This opportunity to speak up for others has helped me achieve the most important aspect that drives entrepreneurship, a purpose.
What is Doctors 2.0 & You?
Doctors 2.0 & You brings together all sides of healthcare. It isn’t a single-sided event, it levels out the playing field by removing hierarchy and opens up to patient perspectives as well as developers, entrepreneurs, doctors, designers, pharmaceutical companies and others from around the world who are designing digital health technologies engineered from their expertise and experience. Everyone is on the same plateau and is able to contribute equally. In my case of course, I am an expert in patient experience, don’t ask me about development or genomic sequencing, that’s why I have to rely on the experience of others in my network.
My Experience at Doctors 2.0 & You
My stage presentation addressed bio-printing and 3D printing and how the predictions say they could eventually replace the need for face transplants. I am not a plastic surgeon, but I have lived through my own surgery and spent almost a decade reading about it. My understanding of social media, online research and networking has connected me to a plethora of information and contacts which has kept me informed on world trends and emerging technology, from a developing country.
The aspect of my origin earned attention at the congress because from thousands of miles away I had accomplished this. I had gained substantial knowledge through researching the internet to earn a place as an international speaker to some of the world’s most respected medical professionals. That was pretty amazing, considering social media and networking made that possible.
My patient scholarship award for recognition of global advocacy towards travel costs from the Society for Participatory Medicine
This year I was able to raise some sponsorship to the congress. One of the biggest contributors was from the Society of Participatory Medicine who awarded patient travel funds to four attendees of the Doctors 2.0 & You (Europe) and Cinderblocks (USA) events which were patient inclusive and ran concurrent to each other. Being from South Africa, this financial aid to travel was a huge help to me. My patient advocacy is voluntary, so societies like this who assist patients are really important. I am honoured to be the first African member in the Walking Gallery of healthcare which was founded by the famous artist Regina Holliday, organizer of Cinderblocks. Thank you to the society of participatory medicine for establishing such an incredible trust for patients. Your recognition of my work made it possible for me to represent my country and others who cannot speak about the issues that affect us too.
Some of the knowledge I gained at Doctors 2.0 & You
One of the most incredible workshops for me at Doctors 2.0 & You was about design thinking in healthcare. This was all about how creative thinking has been used for centuries to problem-solve. How collaboration and teamwork is important as well as how investigating the problems from the “consumer-level” or “patient-level” should be addressed. In the design world, this would effectively be known as the user experience (#ux). We would use feedback from the user to understand how to improve the way a system has been designed.
What is the relevance of knowing this? With all of the diverse technology taking place and also design of mobile applications, one must be reminded to always keep the user in mind. As a designer, I understood this well. Anything, even a software program or mobile application that takes form must have a purpose or a function. Why design it in the first place. A good website for instance may serve as an administration tool for a patient to capture all of their health information which they can share with their provider or save for themselves for future reference. The design of the site should then be created according to that specific purpose.
Another issue may be that with all of the sophisticated technology, our world is still learning how to use some of the technology so we must bear this in mind when designing so that it is user-friendly for beginners. Patients and doctors could really voice themselves collaboratively in this sense in terms of development. In terms of addressing the patient, for design to be effective, technology must address the emotional needs every human faces during times of illness so that it encourages quality interaction.
I visited New York after Paris and spent some time at the Cooper Hewitt museum which had a display about the design process and how to use imagination to problem solve. Creativity plays a major role in the redesign of healthcare. As an arb comparison, a handbag without a zip is pointless. A shopping bag without handles is pointless. They are real feminine examples, bags and shopping, but my point is, everything we design should be functional. It is determining the function initially which is crucial.
The other presentations that I was incredibly captured by was from IDAvatars who work with IBM Watson. This is a mobile application to help Parkinson’s disease patients through utilizing artificial intelligence technology (IBM Watson).This was a huge eye opener for me in terms of what the future could bring with smartphones and remote monitoring. It really was science fiction and I think the foundation for even bigger things like virtual humans. The most impressive aspect of this was that is was very pleasant to interact with which means it will provide a quality experience and quality data.
The other presentations to follow came from the creators of the #safehands campaign. This was done with social media and the creation of a video which had an inspiring and uplifting message to it. Far from the depressing and morbid tones we have experienced in the past with healthcare advertising. I fell in love with the way healthcare was being represented with a positive tone. Health is highly regulated and understandably because of the risk involved. However, in my country, to be honest, investment interest in the sector is dead for many reasons and I wish we could brainstorm ways to resurrect innovation not only to improve access to public health, but to improve our academic level to par with our international neighbours and to leverage the data we collect on a digital platform for research which will improve treatment locally and globally. I have much fear in terms of where South Africa will be as an “emerging economy” if we don’t address this issue in this major sector.
Social media plays a large role in education and innovation, I have been fortunate to have learned about this at Doctors 2.0 & You and while establishing my network in South Africa, that knowledge I have gained will be beneficial. At this years event, Marie Ennis-O’Connor provided a masterclass in healthcare social media which I also attended. She is an international leading voice in terms of the effective use of web 2.0 tools in medicine. To any physician, I would recommend that you follow her articles. She like myself, is a patient and healthcare entrepreneur.
I have extreme respect for Denise Silber who is the president of Doctors 2.0 & You, she has brought together a diverse group of stakeholders from across the world. Because of Doctors 2.0 and You, I have managed to grow my network into a diverse group of thought-leaders in healthcare from around the world which includes the Philipines, Dublin, the USA, Geneva, Australia and more.
Because of social media, networking with others, my experience and attending Doctors 2.0 & You, I own more diverse knowledge from different perspectives than most people in my country and I am able to share it with others who could benefit.
My only wish from investing everything I have into this work I do for my country has been to see our corporates in South Africa re-evaluate their sponsorship policies to help accelerate digital health innovation. I have come across a few who only fund teams and sports related projects and I believe it is time to introduce incentivised projects that encourage our youth to pursue entrepreneurship and innovation in technology. I am a disabled woman from South Africa with a high school education in graphic design who persevered, the most meaningful aspect of that is that anyone can achieve anything though the right belief system.
Technology could probably rectify a lot of health issues in the near future and improve all of our lives, but it isn’t possible if we ignore the issue because it seems “too big” or say it’s someone else’s problem to fix.
Thank you Denise Silber for an amazing event and for giving me a stage to share my story with the world. You are a remarkable woman changing global health.
Creativity has contributed to historical world change a lot more than we know.
“Design is a funny word. Some people think design means how it looks. But of course, if you dig deeper, it’s really how it works.” – Steve Jobs
“The power of imagination created the illusion that my vision went much farther than the naked eye could actually see.” – Nelson Mandela
“May your legacy live on forever in our troubled world Mr Mandela, your vision inspired the world and because of your fight for liberty for all humankind, everyday I am #ProudlySouthAfrican”
Read more about this incredible global digital health event on www.doctors20.com or follow the #doctors20 hashtag on Twitter.
My patient empowerment story:
The journey of a facial reconstruction in South African healthcare – “Ideation of a perfect world” .
Follow me on Twitter @_FaceSA. Please help support the growth of the #hcsmSA community by including the hashtag in your tweet so that South Africa can connect health for innovation and education for the global digital revolution.
Thank you to the amazing companies, mentors, ambassadors and volunteers who support the #hcsmSA community and the idea to advance digital health innovation in South Africa by working together
Basil Strategies and Denise Silber
Sungoddess South Africa
Adriaan Steed Communications & Josiane Jobe Woodhead
2-B Inspired and Inspiring Women Network Gauteng – Shariefa Allie-Nieftagodien
Malcolm Lyons & Brivik Attorneys
Chris Wall Photography
Little Gems – Children and Young Adults with Special Needs Residential Care and Respite, Johannesburg
Rapid 3D Printers
Regina Holliday and The Walking Gallery of Healthcare
Dawn Shaw – International Author / Diversity Inclusion Speaker
Medstartr – Medical Crowdfunding Platform
Beyond Xtreme Zambezi Challenge
The #hcldr community that invited me to learn from their tweetchat
Symplur analytics – Thomas M. Lee
Dr Roy Kim
Dr Martin Kelly
Michelle and Kaitlyn Bauer
Smile Foundation for volunteering opportunities in our public hospitals
My doctors that never gave up on me – Professor Johann P. Reyneke, Dr James van der Merwe, Dr Francois de Beer, Jack Bernard, Dr. Louie Linde, Dr Caterson (Face Transplant and Craniofacial unit – Brigham and Women’s Hospital, Boston) for that hour of time you took to Skype me.
My Dedicated team at Artext – Kefilwe Moadi, John Zeriva and Roxanne Jacobs and my fellow #doctors20 ePatients