This was me at my worst after seven years of failing surgeries.
It took me 8 months to find Dr. Caterson,a craniofacial doctor at the Brigham and Womans hospital who Skyped me
But, empowered with his advice I was able to choose the right specialists I needed in South Africa and
Within 8 months we corrected one of the worst cases they had seen. One of the reasons I battled to find some of these doctors which I didn’t mention in my video was because they weren’t advertising online.
As I mentioned before, I’m currently an e-Patient scholar at Stanford University Medicine X. The e stands for a couple of things which is
The term was coined by a man called Dr. Tom Ferguson who was an advocate for patient empowerment and urged patients to educate themselves to take more control over their health and to use the internet as way to accomplish that. He wrote a white paper which is available to download on the website www.e-patients.net
I’m always incredibly inspired when I visit Stanford University Medicine X
Not only because it’s right in the middle of one of the world’s most innovative hubs, Silicon Valley
But also because they promote a culture of partnering with patients to understand their needs to design meaningful solutions. This was actually a design thinking workshop we did together with Google at Stanford Medicine School for a community platform they are developing.
One of the firms Medicine X work with along with the d.School is IDEO. This is a freely available guide on IDEO.org which explains this process called human-centered design.
Being a medical event, we also focus on an element under it’s umbrella which is patient-centered design.
The first thing we do to design a patient-centered solution to a problem is to ask a question. This helps us frame the challenge.
For the sake of time I can’t go through all the methods, so I’ve chosen design thinking and the first step is empathy
Empathy is basically the step where you need t immerse yourself in your users world to truly understand the needs you are designing for
There are many methods to conduct that user research, including in interviews, but I’ve used an example of online sentiment. This is a post made by one of our well known tv shows here which is doing an insert on hospital acquired infections in private hospitals in South Africa. Where they asked 374 000 followers to comment whether they had ever had one. They had 209 shares and around 80 patient comments.
This is really why analytics companies like Symplur record these conversations, however they are well known in the health sphere because they have the biggest index of registered health hashtags. They also allow you to filter the conversation by stakeholder type and this is generated from a number of discussions including regular tweets, conferences and twitter chats.
So once you have gathered all of your research the next step would be to define what the problem is. So in this case given the misconceptions about superbugs one of the solutions may be to improve education.
You have to define what the problem is based on that data. Out of those 80 comments on Facebook, much of the sentiment showed that patients don’t understand it at all. Some posts included what is this superbug and is it real?
Based on that sentiment I’m going to go back to my original question, how might we make antibiotic resistance common knowledge
Thats when you get to step three which is to imagine a solution to serve those needs.
At this stage and in fact at all stages, patients can and should be involved in the design process. A way of doing that might simply be to have a place where they can share their ideas like an innovation hub, workshops, platforms, in surveys or even on social media.
So using my own experience as a patient, this is one solution that I believed would help solve the problem. I asked myself why some things in health are common knowledge and why things like resistance are not. I made a comparison with issues like using sunscreen, checking the label to see if children can take certain medications and smoking causing cancer.
One of the answers that seemed obvious to me was that marketing played a large role in promoting common knowledge and behaviour change with smoking
In 1950, and smoking was marketed massively across every channel to make consumers believe that it was sexy and fashionable.
But as research emerged about the dangers to public health over the next 60 year period, the message changed in many countries like South Africa along with policies.
And the advertising message changed to smoking is not sexy and it will kill you and others around you.
What that education really enabled me to do was to raise my hand with other specialists to tell them not to prescribe me a course as well as adhere better and ring alarm bells early when my infection didn’t seem to be clearing. But not all my providers were the same. Nurse didn’t give me clear instructions about wound care, I googled it and my pharmacist couldn’t answer my questions about MRSA. When I tried to call support lines at the big pharma, I couldn’t reach anyone.
Hospital websites play a role in that and in a recent search I did, I couldn’t find one for Charlotte Maxeke as well as a few others
Another issue is that patient education needs to promote engagement for it to make a major impact
The next stage in the process would be to build a prototype of some kind like a website, program or app or even design a brochure and then test it. With a means to collect feedback so you can
Iterating it until it’s right
But I’ve run out of time, so let me leave you with this philosophy by Helen Keller.
Promoting Patient Participation in the National Strategy to Combat Antibiotic Resistance in South Africa
How my doctor
educated me in
• No other doctor is to
prescribe you an
antibiotic during and
after a course
• Explained basics of
instructed to take them
at equal intervals (12
hourly, not twice a day)
• Explained why I needed
good lifestyle habits to
rebuild my immune
• Re-iterated to complete
• Contact me in 10 days if
the infection is not
clearing so we can
monitor for signs of