This is a presentation to introduce hcsmSA to you as well as our future vision for this project.
So, Before I get started explaining what hcsmSA is, it’s important that I tell you the story of my patient experience.
When I was 25 years old I had a car accident in Johannesburg.
I had multiple complex injuries but the most significant were those on my face. And as you can imagine it was devastating looking in the mirror for the first time after waking up at a distorted face, especially after being such an attractive woman with my life ahead of me. (add photos of face) TAKE OUT MEDICAL RECORDS – chnge heading to 600 page medical-legal reports
As the years went by, I realised that I needed a multidisciplinary team, experts I had never hear of in my life, and incidently neither had my GP. They all held a different puzzle piece and they worked in siloes. They treated me based on their own expertise, I was never a whole person. I was a rare case for all of my specialists, in fact one surgeon said to me, vanessa, when we get cadses like yours, they are often dead, it’s going to be a lot of guess work.
So, After 6 years of complications and failed surgeries and generating a 600 page medical history through and MVA trial, which I brought with today, I developed a resistance to antibiotics. Change slide to write out after 6 years complications acquitted mrsa
Just in case you don’t knw much about MRSA – photo of stats and how it develops
So out of desperation and fear of more complications I took my medical legal and history records and compiled them into what I thought was a good overview of my history and sent it to every world class surgeon I could find online overseas. Oneday I hit the jackpot, a face transplant surgeon from brigham and womens hospital offered me a free skype call to hel me review my injuries. He was working on caseslike mine all the time. So we spend 30 minuts while he explained what I needed to do.
ADD skull - I needed to cut the bone and realign it. Armed with that information I started driving through johannebsurg and writing all over the country ready to fly to cape town if a doctor mim,icked his advice. Eventually I found a prfessor 30 kms away from me at the suninghill hospital who gaveme the same advive. He had been rated int the worlds best, but out of modesty and not wanting to grow his practice, he didn’t have a website.
2 surgeries and 8 months later after spending a decade of my time getting it wrong because I couldn’t find resources I was finlly able to walk back out ijnto the world and feel human again. That face transplant doctor had emowered me with the direction I needed to make an informed decision.
So, in 2013, the first thing I did was get online. I started advocating. I was in marketing and design for 20 years so I used those skills to really amplify my story across the virtual world. I started offering services to doctors to build websites. Funny when you are labelled an epatient they fortget youre a creative director. Labels are a strabnge thing. I established hcsmSA having seen what was being done around the world with social media in health. I built a social media presence as an advocate for digtal health in south Africa.
I was being invited to speak at these conferences as a patient expert, Maynooth university, doctors 2.0, the woman advancement forum, ylou can see it all in my cv
And finally, 4 years, my e-health research was accepted for presentation at Stanford university in April and I was also accepted for an e-patient scholarship in September. That btw is the BMJ logo.
So what is an e-Patient. This is interesting discussion because there are a lot of health IT companies who say enabled, some say empowered, but it’s all of these and more and actually this goes for all users in a health ecosystem. These are some of our quality design markers. I’ve brought the white paper with and I’m going to encourage each of you to download it and read it and subscribe t the journal on e-patients.net. And this is where health IT must be evaluating on what it describes as an e-Patient.
What is hcsmSA. Firstly, the acronym #hcsmSA represents Health Care Social Media.
This is a screenshot of the hcsm community averaging around 200-500 tweets a day.
So like most of the other hcsm communities globally, hcsmSA It is currently a twitter chat like many other chapters, the first e-health chat in south Africa and we model our topics around SDG3 as the WHO has it explained on their site where the other goals intersect. In a sense we are mining data from all of users using a design methodology, because they are all diverse. I established it in 2013
This is a screen shot of the twitter page
We also have a website where we display upcoming events, our twitter feed, links to our various other channels and we write a blog post before hand with questions which we distribute before the chats. So this one you see here was in collaboration with HIMSS where we discussed cybersecurity in south African health IT.
Some of the topics we have discussed include. I run it monthly at the moment because I think we’re not quite ready for a weekly meeting, but I think bi-weekly we could get some interest.
These are the analytics. We specifically record our conversations on a platform called Symplur. They have around 13 800 registered healthcare hashtags and at the moment they do with with Stanford university, HIMSS, and the mayo clinic. This is a screen shot of the chat where we 733 tweets and 5.792 million impressions. The point of this too is to monitor the growth of the community.
So what is the vision for all of this healthcare social media in south Africa?
Without losing the human touch. Doctors need digital tools, but the art of medicine is still imperative to healing and patient centered care
This is our overview of the course which you have a copy of
So what is the socil landscape in South Africa? Firstly, according tl we are social as you can seehere we are face booke lovers.
Interestingly, social media users grew twice as fast as internet users in 2016, our country is social. Each of these users are patients at some stage.
This is a basic overview future longer term vision.
Sadly, in our public health sector,, this is the reality. And opportunities.