Q&A: Drug-resistant MRSA survivor describes advocacy journey

21 May 2019

Written by Vanessa Carter & Longitude Prize Team

In 2004, Vanessa Carter was involved in a car accident that caused devastating injuries to her internal organs, as well as multiple facial fractures. After a facial implant prosthetic, Vanessa developed an infection which resulted in a decade of surgeries to manage. In and out of hospital, Vanessa was kept on multiple courses of antibiotics. After a year, the infection was worse. In a final emergency surgery, the plastic surgeon removed the prosthetic and sent it for testing. Confused and concerned, Vanessa called for the results and for the first time, was introduced to the term MRSA (Methicillin-resistant Staphylococcus aureus).

Instincts drove Vanessa to research antibiotic resistance online. She came to the understanding that the ongoing antibiotics prescribed were aggravating the methicillin resistance and the diagnosis and removal of the infected prosthetic was required sooner.

Being ignorant about antibiotic resistance made me feel powerless. To this day, I believe that if antibiotic resistance had been common knowledge to me, in a similar way that I know applying sunscreen can reduce the chance of cancer, I might have asked one of my doctors for a diagnostic test sooner.

– Vanessa Carter, antibiotic resistance survivor and advocate 

Vanessa has since been awarded the Foundation for Innovative New Diagnostics (FIND) Voices for Diagnosis community prize for establishing the #hcsmSA (healthcare social media South Africa) twitter network alongside the 72nd World Health Assembly today.  #hcsm is a global hashtag and acronym for healthcare communications and social media which represents the ethical, technical and effective use of social media for medicine. The South Africa chapter (#hcsmSA) reflects Vanessa’s belief that the internet has a pivotal role to play in patient empowerment and that e-Patients should be engaged, educated and empowered to make the best use of available digital technologies.

What inspired you to become an advocate for antibiotic resistance and implement the Antibiotic Guardian Pledge campaign in South Africa?

After completing my surgeries in 2013, I felt that I should have been more informed about antibiotic resistance. I found very few decipherable, patient-friendly resources online. It occurred to me that there were multiple ways to reach the public, for example, I had never seen any warnings about resistance on the pharmaceutical inserts or packaging. Further to this, my doctors could have informed me and explained this as a possibility for why the antibiotics might not have been effective. The specialists were all working in silos and prescribed my antibiotics without the other practitioners’ knowledge. There should have been a central place to record all of this. These issues inspired me to establish a presence on the web to voice my experience with antibiotic resistance to advocate for change.

Since starting my advocacy, I have been appointed to several advisory groups, one of which is the South African Antibiotic Stewardship Program (SAASP).  Through this, I was able to help implement the Antibiotic Guardian Pledge Campaign in South Africa working alongside one of the co-chairs, Professor Adrian Brink (Head of the Division of Medical Microbiology at the University of Cape Town). The pledge has been adopted by the National Department of Health and the Federation of Infectious Diseases of South Africa (FIDSSA) and the Minister of Health, Dr Aaron Motsoaledi, also recently signed in support.

The purpose of the pledge is to encourage multi-stakeholder participation across human, animal and environmental health (One Health) at all levels, including civil society, to improve the responsible use of antibiotics. Using my story as an example and now being more educated and empowered, I realise that I could have been more involved in my own care. This didn’t only extend to requesting a diagnostic test from my doctors or the responsible use of antibiotics, but also to taking extra care of my infection in the hospital and at home.

Vanessa Carter presents her advocacy work at Stanford University Medicine X

Can you tell us about the Healthcare Communications and Social Media South Africa twitter network (#hcsmSA) and the impact of your work?

I established #hcsmSA on Twitter in 2013, shortly after learning about the global community #hcsm. This was an acronym for Healthcare Communications and Social Media (HCSM) and it focused on the ethical, technical and effective use of social media to disseminate research with the hashtag #hcsmR. These techniques included using healthcare hashtags appropriately, applying ethical research principles and studying the use of social media for applications such as patient communities and discussion groups. #hcsm is also being used to improve the dissemination and quality of patient education, medical education and science communication, as well as to collect data for analytics. I started moderating a Twitter chat for #hcsmSA in 2016 on a monthly basis, inviting experts from diverse backgrounds to discuss issues pertaining to Sustainable Health Development in South Africa, with a special focus on digital innovation. Transcripts are captured and disseminated afterwards for researchers and government officials to hear views from various perspectives. A session can be seen here from World Antibiotic Awareness Week.  Further to that, real-time data from the community on Twitter can be accessed on Symplur.

I have also recently written and taught the first Continuous Professional Development (CPD) course accredited by the South African Medical Association (SAMA) about ePatients and I am developing further workshops to teach medical stakeholders on how to use social media.

”A simple understanding of how to set up a professional profile or practice good digital citizenship could make the world of difference to how professionals interact online.”

– Vanessa Carter, antibiotic resistance survivor and advocate 

As a drug-resistant infection survivor, I believe medical professionals have an important responsibility towards sharing information to the public, but also to their peers and other healthcare workforces that can learn from them. #hcms enables us to do that globally. With over 3.2 billion internet users across the world and over 54% of the South African population using the internet, our world is becoming increasingly more connected and the web is an important tool to reach those citizens. My 18-year marketing background sparked an interest in connecting my patient experience to the field of digital medical marketing.

The three Voices For Diagnosis annual community prize winners: Bolo Didi, Vanessa Carter and Rhea Lobo

Congratulations on winning the Voices for Diagnosis prize from FIND! How do you plan to use the US$10,000 prize for your work?

I recently taught the first ever hcsmSA course about ePatients. The prize money will help me to develop the training further and help fund my advocacy. It will also support the Twitter chats, which until now have survived on self-funding, life savings, crowdfunding and donations in kind, so I am truly excited to have this financial boost to take my work further. I also rely heavily on funding to attend various events, where I network and gain educational opportunities as well as share my patient story and awareness about antibiotic resistance. Two such events this year are Africa Health in Johannesburg attended by thousands of delegates across Africa where I will be presenting about ePatients and Stanford University’s Medicine X where I will be presenting an abstract titled “Using a systems thinking approach to tackle Antibiotic Resistance” from a patient perspective.

What are your future plans for the network and what do you hope to achieve?

I hope to see an annual HCSM community event in South Africa which gives additional presenters the opportunity to talk about their own research, using social media as a sharing tool and how the web can make it possible to share the views of many. I’d also like to see the workshops become online courses so it becomes more accessible and affordable, especially for public health workers and patients. Ultimately, what I hope to achieve is that using social media for healthcare and science communication becomes as acceptable as printing educational posters for a hospital, or writing an article for a medical journal.

Vanessa Carter is an Antibiotic Resistance and ePatient Activist. She is also founder of hcsmSA (Healthcare Communications and Social Media South Africa). Follow Vanessa @FaceSA and more information vanessacarter.co.za.

The Foundation for Innovative New Diagnostics (FIND) announced today (21 May 2019) that the 2018/19 Voices for Diagnosis community prize winners are Bolo Didi (Say Sister), #hcsmSA (healthcare social media South Africa) and MUMSA (Makerere University Medical Students Association). Each winner will each receive US$10,000 to advance their work in support of diagnostic access within their communities. Voices for Diagnosis prizes will be awarded at an event on the sidelines of the 72nd World Health Assembly in Geneva, Switzerland today.