#sasocp2017 - Antibiotic Resistance: The Patient Experience and Design Thinking
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MRSA originated as a strain of Staphylococcus aureus bacteria. It evolved resistance to methicillin and other antibiotics commonly used to treat staph infections. As a result, MRSA infections have become difficult to treat with many front-line antibiotics.
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#sasocp2017 - Antibiotic Resistance: The Patient Experience and Design Thinking
- 19. • Where did mrsa come from?
Editor's Notes
- Good morning my name is vanessa carter and I’m going to be speaking to you today about my patient experience with MRSA. So Id like to start by explaining what I do in e-Health, because I wear three hats.
- I’ve been a patient advocate for some time and spoken at quite a few international digital health conferences like these, being Maynooth University, eyeforpharma, Doctors 2.0 and You, the woman advancement forum Africa. I’m on a couple of advisory boards and I’ve been a social media ambassador for HIMSS which is the health information management system society .
- I’m technically what is referred to as an e-Patient.
- So as you can imagine, I get asked this question a lot, what is an e-patient. There are actually a few hundred of us advocating globally, as far as I am aware I am the first recognised as an e-patient advocate in Africa. But, hopefully there will be more.
- Well, Dr Tom Ferguson first coined the term e-Patient and he wrote a white paper about it which today is a working scholars group. The white paper is available for download on the website e-patients.net. Basically Dr. Ferguson wrote about how patients had evolved through the years with having access to resources on the web and through using other technologies. The e represented a couple of things and this is important to know, because as we innovate for digital health, it will almost become a checklist for what we are trying to achieve in health innovation and design.
- I’ve been quite fortunate to speak at Stanford University this year and I’ve also been accepted to their e-Patient scholarship program in September where I will talk about my experience with antibiotic resistance. Something very important I want to point out to you on this slide, on the right hand side is the BMJ (British Medical Journal) logo which reads “partnering with patients”. When it comes to design, otherwise known as experiential design, the idea of partnering to co-create is going to be at the heart of innovative solutions.
- So the second hat that I wear and some more health IT jargon. I am the founder of hashtag “hcsmSA”
- I get this question a lot too. What is #hcsmSA. The acronym stands for health care social media south Africa and what that basically is right now is a monthly Twitter chat that brings diverse stakeholders together to discuss sustainable health development. we’re also in the process of developing CPD courses.
- This is a screenshot of the hcsmSA community members on an analytics platform called Symplur. We record our conversations and its made available to the public for R&D purposes. I just want to give you an idea of how many health hashtags are already registered on symplur, there are 13 679 and they are all curated centrally so it makes it much easier for you to find them. Conversation data is extremely important and one way to collect agile data like this is through hashtags and clusters or communities like this.
- But, I didn’t come here to focus on what I do,
- I came here to tell you my story and about the 10 years it took me to get there.
- When I was 25 years old, I had a car accident in Johannesburg.
- I had extensive injuries, major internal bleeding and complex facial fractures, it was so complex that after six years of compiling medical-legal reports I ended up with an impressive 600 page medical history. I’ve actually brought that telephone directory with me today so you can get a glimpse of the paperwork.
- My facial damage needed all sorts of experts, half of which I never knew existed and neither did my GP. Each doctor held a different piece of the puzzle and it was difficult, if not impossible to get them to work together.
- After 6 years of ongoing surgeries resulting in ongoing complications, I developed a resistance to antibiotics
- It was MRSA, until that day I’d never heard about this deadly superbug before.
- And as you could imagine, it was frightening.
- The fourth prosthetic implant on my zygoma had become infected. For a year following that, I went for two debridement surgeries and skin flaps to repair the tissue that had been eaten away. I was prescribed multiple courses of antibiotics, sometimes by different doctors simultaneously, but the infection just kept coming back. There were days where I thought I wouldn’t wake up to a face or that it was going to kill me. What striked me as odd was that at no time in that year had any of my doctors tested for MRSA. Eventually when the zygoma implant was removed and I was rotated on different types of antibiotics it cleared. But they couldn’t perform surgery in that area again for a year.
- I didn’t know where MRSA had come from, but one thing I did know was that I couldn’t afford to make any more mstakes. I looked worse than I did after my accident and I knew any more complications could mean losing my face or worse.
- So I compiled my 600 page medical history into a 4 page summary with photos and began emailing it around the world. Eventually a craniofacial doctor at Brigham and Women’s hospital offered me a free Skype call. He was part of the face transplant team and worked on numerous cases like mine. He spent 30 minutes on Skype explaining my injuries and the steps I needed to take to complete my reconstruction in as few surgeries as possible.
- I did my first surgery several months after that which was a zygomatic osteotomy and my second which was a rotation flap and within 8 months I could go back out into the public and I felt like a human being again. He had empowered me from thousands of miles away with information. The funny thing was that I ended up with a wonderful professor at the Sunninghill hospital who I battled to find in the first place because he didn’t have a website.
- But, I’m going to stop there for now.
- I mentioned in the beginning of my presentation I wear three hats. Well, the third is that by profession I am a designer.
- I owned an advertising company for 18 years and after my reconstruction I even started to design medical websites with patient-education because one of the biggest issues I had was to find doctors and information on the web. Just like I battled to find the professor.
- I was using my own patient experience to identify gaps and design a solution.
- Empathy meaning a deeper understanding of the patient experience will help us to innovate meaningful solutions.
- So, I’m going to share 4 random events from my patient journey with MRSA and ask a question after each one which I’d like you to take a note of and just give it some thought after today to see if you can think of any solutions.
- Number one, my doctors worked in silos. They didn’t communicate between them, often I had to be the messenger. It added unnessary time, because it was difficult to schedule appointments between them. Why do I think this caused complications? Because I had unneccesary surgeries, and between them I was never sure where the infection was coming from. While the ENT surgeon was draining my sinuses, the maxillofacial surgeon was keeping me on multiple courses of antibiotics referring me back to the ENT surgeon and the plastic surgeon was doing debridements and flaps. After a year of that, my zygomatic prosthetic was removed in an emergency procedure and only then did I see my test results that said I had MRSA.
- So my first question, with all of this technology on the way, can we use it to improve how we collaborate across disciplines in our health system?
- Number 2: Access to my medical reports was what enabled me to navigate the system because I could read information about my condition. It helped me understand which doctors I needed and where to begin. It also helped me to send my history overseas for an opinion. In the end, I used It to reduce complications because I made more informed decisions.
- So question 2 – Can digital technology enable patients to access their data so they can be more informed and navigate the system on their own more efficiently?
- The web was underutilised. I searched for the doctors I needed locally but they weren’t online. I also battled to find reliable information. Now one of the things doctors are doing globally is blogging and that truly is one way to get accurate information out. I was googling for information like how to clean my face, can I use tap water or should I disinfect my counter when I change the dressings. At Stanford this year, it was interesting when one doctor said, we write more for our peers in journals than we do for our patients. I must say, I myself was a regular visitor on pubmed and it’s not easy to understand.
- So question 3 – How can we improve our doctors online presence and patient education resources?
- So this re-iterates that, Much of the marketing material can be confusing for a patient and a lot of the time they don’t explain enough about antibiotic resistance. What we don’t hear after those famous words, “complete the course” is why. We need to tell patients why they should adhere and finish a course. Something simple like “Non-adherence can cause antibiotic resistance which can be fatal.” That’s the education that patients are missing. Patients need to be informed. We’re no different to other countries running awareness campaigns.
- So question 4 – Can the marketing material we use for antibiotics explain the risk of resistance more directly and in patient-friendly terms?
- So in closing, In design thinking we call this stage an ideation.
- Being a patient who experienced antibiotic resistance, this is something I imagined might help those who have access to a smartphone. An app with a digital avatar that can speak in different languages that helps you with common questions, has a medication reminder and connects to your electronic health record so all your doctors can see when you were last on a course. The most important part of apps is that they can also collect patient feedback in real-time, so it can keep improving based on their feedback.
- This is the Mayo Clinic innovation centre which is on premises and uses a multidisciplinary approach where they include patients to research gaps in the system. You’ll start to see a lot of this design thinking methodology for health innovation, let’s hope south Africa will be able to open itself up to this approach. Surveys will eventually become an outdated way of doing real research.
- Finally, this is a man called Tim Brown, if you don’t already know who he is, he is the CEO of IDEO and a design thinking pioneer. The theory about good design is to understand the users experience, because without that, digital technology won’t be as meaningful as it should be.