In 2004 Vanessa Carter was involved in a car accident that left her with extensive injuries to her face. After multiple surgeries and four prosthetic implants over seven years, Vanessa developed an infection that worsened over 11 months, leaving her in danger of losing her face. She underwent emergency surgery and was diagnosed with Methicillin-resistant Staphylococcus aureus (MRSA). Vanessa’s story highlights the numerous challenges that shape a patient’s journey and the formidable need to embrace #digitalhealth to redesign the health system around the patient.
How did you become an e-Patient?
I’d never heard of MRSA before my diagnosis so I began researching it online and learned that there are many ways MRSA can be acquired including the overuse and misuse of antibiotics, which was entirely plausible given my situation. A year after the implant was removed and a course of a different type of antibiotic, MRSA finally disappeared but my doctors weren’t sure if the damage it had caused to my face could be repaired.
Out of sheer desperation, I compiled the medical reports I had accumulated during my Road Accident Fund trial and emailed as many of the best plastic surgeons I could find around the world. Six months later, I got a reply from Dr Edward J Caterson, a Craniofacial Face Transplant surgeon in Boston. He offered me a video consultation and in the few minutes we spoke he explained what needed to be done in as few surgeries as possible. I took his advice and visited a number of surgeons in Johannesburg until I found world-renowned Maxillofacial Surgeon Professor Johann Reyneke. Within eight months my surgeries were complete and my face was perfect.
Immediately after my recovery, there were a few things that bothered me. For one, most of my doctors and specialists didn’t have websites which made it difficult to navigate the system and find the right specialists. I had no idea that surgeons revered around the world were on my doorstep because they had no web presence.
Secondly, my doctors were working in silos. I didn’t have a multidisciplinary team working together to treat my case and all the associated complexities. I also didn’t have one central medical record that they could refer to which often meant specialists would prescribe me a repeat course of antibiotics without having access to a full picture of my patient journey.
Lastly, I didn’t think that enough was being done to educate patients about antibiotic resistance. I also had 18 years’ experience in advertising and decided to use both experiences to advocate online. I established a presence and built online communities on social media platforms like LinkedIn, Facebook, Instagram and Twitter. I discovered a health Twitter chat called #HCLDR, which is an acronym for ‘healthcare leader’ and was invited to participate by one of the founders. For a year I woke up religiously at 2:30am SA time to participate in that chat and learn from other members that included CEOs from the Mayo Clinic and Johns Hopkins Hospital, researchers from Stanford University and other e-Patients like myself. In 2014 I was invited to attend Doctors 2.0 & You in Paris as a global guest.
Since then, I received further invitations from Maynooth University, eyeforpharma and local organisations like the South African Society of Clinical Pharmacy and the South African Antibiotic Stewardship Program which I am now an advising member of. This year I was appointed as an accredited social media ambassador at the HIMSS conference in the US and awarded a Scholarship from the Stanford University Medicine X Academic Program where I am learning about the role of e-Patients and patient-centred health innovation.
What does it mean to be an e-Patient and are healthcare professionals in SA ready for it?
The term e-Patient was coined by Dr Tom Ferguson and the “e” represents a few things. Most people believe it to be “empowered” and “electronic” as in consumer-led digital transformation, but it is more than that because of the complex role technology plays in healthcare. So the “e” in e-Patient encompasses concepts that include Engaged, Educated, Empowered, Electronic, Emancipated, Equal, Evaluating, Enabled, Equipped and Expert.
South Africa already has e-Patients, anybody who uses the web or a digital device to find information and gather health data is an e-Patient. The internet has opened up access to information for millions of patients but social media is closing the gaps in information even further as more community platforms emerge such as www.patientslikeme.com which helps patients compare side effects of medications they are taking. And we’ve also seen how mobile applications can empower patients even further.
We have the technology at our disposal to develop meaningful solutions to improve public health systems but we aren’t utilising it effectively. Some of our major provincial hospitals still don’t have websites to open communication with patients, offer online appointment bookings or links to mHealth apps endorsed by the National Department of Health (NDoH). We are missing the chance to realise some of the benefits to technology especially considering 54% of the population use the internet according to the International Telecommunications Union (ITU). Many people ask me if I think South Africa is ready for e-Patients and the answer is always yes. We just need to shift our mind-set about the potential value of technology and the web.
You mentioned the need for hospitals to make a deliberate effort to establish a web presence. What are some other ways technology can improve the patient experience?
Firstly, I think every doctor should be online. If they don’t have their own website, they should list on an appropriate site that the public can easily access online. Another benefit of listing online is that doctors have some reference to refer patients to specialists as often they network in different circles.
Secondly, once you scratch the surface there is a ton of healthcare technologies out there which can be confusing for HCPs and patients. We need a library of sorts that lists and rates trusted health apps and platforms to help people make better technology choices. There should also be central topic-focused sites with reliable, curated information that e-Patients can access and navigate easily.
Something that is very important when implementing innovation but that we often forget is that the best way to genuinely resolve the issues that patients face is to involve them in the design process together with other stakeholders. Patient-centred design, which falls under the human-centred design umbrella, is fundamental to health innovation and we need to develop the culture of inclusion now if we really want to transform healthcare for the better. Understanding the patient experience will enable us to identify gaps in the system much faster and design functional solutions.
Your story would have been very different if you didn’t take a proactive approach to your medical records. What would you say to others about owning their patient records and participating in their care?
Patients need to know that they have the right to ask for access to their records.
One thing I learned when requesting my records for a surgery I had at a private hospital was that they destroy them after six years. So my advice would be to ask for them every time you have surgery, it is after all listed as one of our patient responsibilities to look after our health records and provide accurate information to a physician. In my case, not being able to share my medical records with the specialist in Boston might have resulted in a very different outcome for me. I believe that access to and ownership of medical records is the first step in patients taking responsibility for their health, understanding their conditions and minimising delays and risk in an emergency.
Social media and the internet have become an integral part of modern healthcare; tell us more about #hcsmSA?
“hcsmSA” is an acronym for Healthcare Social Media South Africa. I established #hcsmSA in 2013 after connecting with Thomas Lee, Co-founder of an analytics platform called Symplur that indexes health conversations by hashtag. There are over 30 geographic hcsm online communities and Twitter is our primary platform because it is open and makes it easier to access data, as opposed to closed platforms like LinkedIn or Facebook.
Social media falls under the web 2.0 landscape, where everything – including how we search for information – is different. Under web 2.0, doctors use social media to share information which they have either researched and written themselves or shared from a credible source. In other words, social media isn’t the place to offer medical advice or diagnosis. It is, however, a powerful tool to disseminate up-to-date, quality health information. It’s also a place where doctors can engage with colleagues from around the world and learn about the latest advances in their speciality such as in the #meded community where they discuss the integration of digital technologies into medical education. By following the right health influencers on Twitter, doctors have access to real-time information from reliable sources as opposed to having to manually search using search engines that could return outdated information.
#hcsmSA is also a monthly Twitter chat where we invite various stakeholders to participate and offer doctors and patients an opportunity to learn and share their perspectives on digital transformation as well as other issues affecting sustainable health development in South Africa. We record our transcripts with Symplur, which are always available to the public for research and development purposes. This is useful for various reasons including to start-ups or policymakers both globally and locally. We publish a blog monthly with questions which can be viewed on our site www.hcsmSA.org. Anyone can participate in any of our chats. We encourage diverse perspectives.
Where would you like to see #hcsmSA in a couple of years?
I’d like to build on my initial goal of getting HCPs online, even if they’re new to social media and using hashtags. There’s a guide compiled by the South African Medical Association (SAMA) that new users are encouraged to take a look at and then of course, participate. Our chats are always open to every stakeholder in health including nurses, payers, doctors, entrepreneurs, patients, caregivers, IT developers, designers, journalists, academia, hospital CEO’s and policymakers.
I’m also working with a private university in Pretoria to develop it into a digital empowerment CPD-accredited course to teach HCPs how to use social media and the web effectively. Data is changing the way we live our lives, technology is changing the way we participate in our health, communicate and access information. The healthcare sector has the opportunity to lead transformation in individual’s experience of the health service all the way to changing an entire populations’ quality of life so why wouldn’t we harness this extremely powerful tool for good?