I am a South African facial difference patient advocate. “Facial difference” is a term which is being reviewed globally and many are hoping that it replaces other terms such as facial disfigurement or deformity which carry a negative connotation. These facial differences can be caused by various circumstances which include trauma, cancer, rare disease, craniofacial anomalies, etc. In 2013 I started an awareness campaign called the FaceSA Project on Facebook. It is a page dedicated to facial difference patients In South Africa who battle to face society because of a negative reaction to their disfigurement ( www.facebook.com/facialdifferenceSA ). The page was also created to encourage technology to treat these conditions. After running the campaign on Facebook for a few months, I joined Twitter and created a community with the # (hashtag) #facialdifference (@_FaceSA). The hashtag was submitted to Symplur, an American health care tweet chat analytics company and I’m pleased to say that after a year and a half the #facialdifference community has grown steadily with users from around the world.
During this time, I was honoured to be invited as a special guest to attend a medical congress in Paris called Doctors2.0 & You (www.doctors20.com #doctors20). If you are not familiar with doctors2.0 & You, it is known as THE international healthcare social media congress in Europe and works in association with Stanford University’s MedicineX. The congress teaches its delegates about how social media, new technology and the internet is transforming health care globally. The most valuable aspect of this congress is that patients are included.
South Africa is a country which is substantially behind in terms of medical technology, so it was an incredible privilege for me to attend and learn more about the global digital health explosion.
Walking into Cité internationale universitaire de Paris was an overwhelming experience, especially being from my humble home in South Africa. Absorbing these exquisite surroundings rich in French history was mind-blowing. One of the most surreal parts of #doctors20 was being able to meet all the people I had been interacting with online.
It was an honour to represent South African facial difference patients and meet some of the most influencial minds in global health care which included Denise Silber @health20paris (President of Doctors 2.0 & You – #doctors20), Dr. Larry Chu @ (Executive director of Stanford University MedicineX – #medx), Tom Fox @tmlfox, one of my mentors, (Founder of Symplur.com), Audun Utengen @audvin,
Greg Matthews @chimoose, Andrea Borondy Kitts @findinglungcancer, Christine Bienvenu @tinaburger, JamieTripp Utitus @velocitygrl34, Dr. Homero Rivas @mHealthsurgeon, R.Grossmann, MD, FACS @ZGJR, Michael A. Weiss @hospitalpatient, Michael Seres @mjseres, Angel Gonzalez @angel189, Lionel Riechardt @lionelriechardt, Alan Thomas @ALANROYGBIV, and Andrew Spong @andrewspong to name a few.
The congress was spread over two days and consisted of two different types of educational settings. The first day was in the form of a workshop with the speakers being able to answer one on one questions with the delegates. There were a few rooms operating at once and you could choose which topic best suited you every two hours. The choices available suited either patient or medical professional and focused on how technology was changing that specific area of medicine.
DAY 1: The Workshops
ePatients & Quality of Data Workshop:
The first workshop I attended was about ePatients and the quality of data they distribute. The talk was given by Dr. John Hixson – (UCSF, VHA) Researcher in online epilepsy communities (USA), Dr. Philipp Goos – jameda.da, Patient evaluaions (DE), Michael A. Weiss – Patients on social media
(USA), Dr. Hubert Mechin – Drugee pharmacovigilance declarations (FR), Michael Seres – ePatient (UK).
I learnt about the different social media platforms being used by ePatients as well as the importance of virtual communities. In South Africa, we have only recently started to utilize social media in marketing, let alone in health care. One of the areas of focus was about online patient communities and how connecting patients could give hope as well as provide a platform whereby statistics could be gathered and studied.
Googleglass Unconference session
My second workshop was all about that awesome gadget called googleglass!! I’m a bit of a tech junkie, so I couldn’t wait for this one. We’ve seen tons of articles in South Africa about googleglass, but to physically be able to see and touch these glasses was incredible. The workshop focused on how physicians are using googleglass in surgery and in medical education. The main speakers for this workshop were Dr. Rafael Grossmann – EMMC (USA), Dr. Marlies Schijven – Amsterdam Medical Centre (NL), Dr Hamero Rivas – Stanford University (USA), Marcus Gordon – Edelman (USA).
Serious Games and Gamification
It was pretty mind-boggling to hear that game developers are playing a role in advancing medicine. Health care games are being developed for patients and medical professionals for purposes which include education or in some cases to adapt certain behaviours. The workshop was given by Evert Hoogendoorn – Ijsfontein Applied games in medical curriculum (NL), Aad Livaart – AAD – APP/Maarten Ponssen – Medix Games and Continuing education (NL), Ellis Batholomeus – Wonderland – Kidney foundation game (NL), Dr. Marlies Schijven – AMC + International society of simulation. I can only imagine the future potential of gaming in health care with innovations such as health care virtual reality on the way.
New data on Physician and Patient engagement
This was an interesting workshop which was focused on how social media and the internet is being used for patient engagement. The workshop touched on various aspects including global patient connections & how analytics are being gathered on twitter and how these analytics benefit medicine. The workshop was given by Greg Matthews – WCG Physicians and oncology, global conversations (USA), Eugenio Santoro – Mario Negri Institute – Italian cardiologists (IT), Dr. Frederic Llordachs – Doctoralia – 100 million users (SP), Ben Nowell – GHLF – Patient Research Data (USA).
Personal Blogging, what works and what doesn’t?
I thoroughly enjoyed this, given by the dynamic Michael Seres, a Bowel transplant ePatient from the UK. He spoke about the most effective ways in which an ePatient can write about their conditions on a public platform like a blog. Michael also spoke about the importance of sharing experiences with others and how blogging has helped patients in terms of the healing process. Whilst in some cases data from an ePatient can also be used for research purposes.
Besides the workshops listed, other topics included educating physicians online, Masterclasses on social media curation, Pharma eMarketing, Start-up pitches as well as quantified self, devices
Day 2: on Stage
This was the time when we all gathered in the auditorium and listened to some of the most innovative minds in global health from around the world. I was very honoured to be given the stage for a few minutes to discuss the current situation in South Africa in terms of digital health. My emphasis was focused on how patients need to overcome their fears and share their stories online. I also spoke about the importance of our South African physician’s visibility in search by having websites which are also good patient resources. I spent the day learning about all the “science-fiction” medical technology being innovated globally, technology like nanotechnology, bio-printing, robotic surgery, the use of googleglass in surgery, mobile health (#mHealth) and quantified-self devices to name a few.
These were the topics of discussion on stage:
Googleglass for surgery, pharma & payers
Data to Big Data: Good for whom?
Can social media stop colon cancer?
Physician engagement, communities and pharma
Quantified self – gadgets and overview
Digital pharma – Hospitals, Patients, Patient drug research
Mobile Health, best practices
Mobile Health, does it work?
Serious Games: How gaming can benefit health care
A look into the future with medical futurist: Dr. Bertalan Mesko (@berci)
The most incredible part about #doctors20 is that all sides of medicine come together at one event, from patients to doctors, scientists, pharma companies, entrepreneurs, developers, everyone is working together to spread their knowledge & encourage innovation.
I’ve returned to South Africa with such a valuable gift, knowledge from an experience which has altered my perspective towards medicine and hopefully it will improve my advocacy towards getting more doctors online in South Africa.
After spending some time with the president of Doctors2.0 & You, Denise Silber, I was so inspired by her work she has done and the determination she has to make a global impact. It was an honour to be a part of her event and after meeting other incredibly inspiring people and I am truly motivated to know that with dedication and perseverance, the advocacy I am doing can make a difference to my country too.