I am an e-Patient Scholar at Stanford University Medicine X which is a program that brings together diverse stakeholders incl patients, hcps, IT companies, academic sector and startups to explore innovation in health
I’m also the founder of an online Twitter chat and community which operates on the hashtag #hcsmSA which is an acronym for healthcare social media south Africa and which we model around the sustainable development goals. But before I go any further, I’m going to play my video for you to explain my background as a patient advocate.
This was me at my worst after seven years of failing surgeries.
It took me 8 months to find Dr. Caterson, a craniofacial doctor at the Brigham and Womans hospital who Skyped me. He had worked on cases like mine often. So armed with his advice,
I was able to navigate South African health until I found the right specialists I needed to complete my surgeries
Within 8 months and two surgeries those Johannesburg doctors corrected one of the worst cases they had seen. One of the reasons I battled to find some of them which I didn’t mention in my video was because they weren’t advertising online.
As I mentioned before, I’m currently an e-Patient scholar at Stanford University Medicine X. The e stands for a couple of things which is: read
The term was coined by a man called Dr. Tom Ferguson who was an advocate for patient empowerment and urged patients to educate themselves to take more control over their health and to use the internet as way to accomplish that. He wrote a white paper which is available to download on the website www.e-patients.net there is also a journal there with other resources explaining what an e-patient is. read
This e-patient revolution has been taking place for several years. I’m sure some of you have heard of the term Dr. Google. For those that don’t, it’s patients who use the web to search for health information. There have always been pros and cons to this issue. Both on the health care providers side and on the patient side. Read
Is the population using the internet? Graph from ITU. Although there is still a lot of work to be done in developing countries like SA there is massive growth and demand. In terms of social media, 13 million people use facebook, 7.4 million use Twitter which is 12%, 8.28 on you tube and 2.68 on Instagram. Important to understand is how these users behave online which organisations like ITU and PEW research and according to one of their studies, around 80% of users search for health related information. The second question is are they finding useful information and if not what can be done about it. read:
So I decided to do a search locally to test what e-patients are finding on google on the keyword “Johannesburg hospital” And this was the result which I got on the 20th of November showing that there was no website. That’s really important because websites are still central contact points to provide patients with important resources like patient education and mobile apps, among other things.
Looking at the stats and what is available on the web, one has to ask if those tools and resources can be improved and what benefit it can have not only to e-patients searching for the information but to governments too. For example, displaying patient education in different languages which workers can direct patients to or public notifications about issues like vaccines. Very critical, communities, not only to give patients additional support but this is truly a means to collect clean, meaningful electronic data on various diseases and of course research about the patients experience. Feedback so systems can adapt to user feedback.
But the web isn’t just google. It’s made up of a lot more than that. Was reffered to as health 1.0
So have patients. Its also where e-patients have evolved to a more sophisticated user of the web to find information. See how I illustrated it on thlis slide, as we have moved from no web which we had paternal care, to having access to Google and other search engines in web 1.0, to many of today’s epatients who are using social media which fits under the web 2.0 area.
Where we move on to health 2.0. where things like hcsm, particaptory medicine and empowerment fits under its umbrella.
The Conversation Prism is a visual map of the social media landscape. It's an ongoing study in digital ethnography that tracks dominant and promising social networks and organizes them by how they're used in everyday life. It defines how each social platform is categorised and how they function. Facebook is a social network linkedin is a niche network, twitter is a microblogging site. They are all different. Take note of gave everyone a voice on the left of the slide. Important, gave each patient the tools, reiterate the word tools to redefine how healthcare was being navigated online.
Example of an advocacy blog by a colleague of mine Marie Ennis o Connor. She writes about breast cancer and won awards. She also writes about hcsm and is epatient scholar. Patient narrative. Acts as an influencer for patients entering this area.
Another way is to curate resources to central hubs, specifically because of the issue with search engines like google that is difficult to navigate. Diabetes site in the UK whch has info including recipes, daily life, sharing stories, info about type 1 and type 2 diabetes. These sort of hubs are seen as more trustworthy than info scattered on the web. Wordpress which is a blogging tool on web 2.0.
They also form community groups. Here is an example of a few on stes like Facebook. I didn’t go into these groups because of privacy issues and unfortunately some are closed, but you can see here there are various ones: read: 6 million health related groups on facebook. Mac Zuckerberg seen such an important opportunity that he recently invested a few billion dollars into communities
In fact already working on tools for web 3.0 using virtual reality in communities. This is a project still under development called SPACES.
Beneficial to him because the more engaged e-patients are, the higher the probability of quality data. But we are still some years away from that, given both access to ICTs and the digital divides.
A lot of research taking place in this because its such a highly regulated industry. But what’s important to know is that there are major changes taking place and the question we should ask is how do HCPs prepare
Obvious answer, be informed. Not aware of any set policies which I investigated recently again, but SAMA do have a guide. Digital footprint. Professional at all times. Building a course at FPD with MP consulting for hcsmSA.
So what is hcsmSA is an acronym for hcsmSA. There are currently about 30 hcsm communities globally on Twitter, The way these communities have been formed is by the use of a hashtag. So hashtags are what we call metadata in web 2.0 and when you click on them, they connect you into a thread of other users and conversations. #hcsmSA is the geographic healthcare social media community for South Africa
Analytics is a word you are going to hear often in future. The web is growing at a rapid rate. There are open platforms, one of them is Twitter. In terms of the whole web 2.0 and web space, because search engines also generate data, it’s very dispersed. This inforgraphic basically illustrates the type of data being generated in 60 seconds. 2.66 million searches, . 433 tweets. Web is expanding at a rapid rate and there is a lot of noise to filter through
Important to know the web generates data and whats going to be critical to healthcare as we move into digital transformation is going to be figuring out how to leverage that data. One big problem with platforms like Facebook is that it can be difficult to extract some of that data especially in closed groups.
Tons of analytics, business intelligence platforms, and Im not saying they cant be used for health data, but what makes Symplur so unique is that its being developed specifically for health by health.
We analyse it.
Healthcare social media (hcsm) is an academic project associated to an analytics platform called Symplur. Their web address is www.Symplur.com.
Some of the institutions they work with include Stanford, nhs, Cardiff, nih, among others. I just want to point out that the do have an online journal of articles about research being done in this space and it can be accessed on the platform or by searching the hashtag #hcsmR. Built by health for health.
Health hashtag search engine
They also allow you to filter the conversation by stakeholder type which again is important to what we call quality metrics. Break down the data filter out noise.
What is this doing for health?
Being in antibiotic resistance give a few stats. As digital transformation takes place measuring conversations around topics, complex. Limited noise. This was the registered WHO hashtag. Read slide.
Red fields represent the amount of tweets. Notice South Africa is red.
Useful when using a standard health hashtag for a conference. Also discovering who to follow so you are kept up to date on reliable news.
Health is going digital
e-Patients and Healthcare Social Media (#hcsm)
Cyberchondria, otherwise known as 'compucondria', is the unfounded escalation
of concerns about common symptomology based on review of search results and
literature online. Articles in popular media position cyberchondria anywhere from
temporary neurotic excess to adjunct hypochondria.
• Support – Live chat
• Online communities
• Patient education
• Mobile Apps
• Links to Educational Hubs
• Links to Associations
• Links to Charities
• Links to Helplines
• Public Notifications
• N.B! Feedback (etc.)
Technologies like the web have
web 1.0 > web 2.0 > web 3.0 (IoT)
Curated education hubs
As of June 2017, 51% of the world's population is on the internet generating data
Many big data analytics platforms on the market
Health hashtags submitted by users and approved by Symplur
which makes it easier to filter out noise on Twitter and simplifies navigation
125,000 unique individuals
Social graph: Use of #AntibioticResistance by quarter since 10 September, 2013
showing conversation spikes during WAAW
Map of Twitter accounts using the hashtag based on the Bio-Location field in the user’s profile
Tweet language around #AntibioticResistance
24 languages represented
Joan Gavaldà, MD, PhD (@gavalda_j), from University Hospital Vall d'Hebron, Department of
Infectious Diseases tweeted #AntibioticResistance 6,638 times
WHO (@WHO) most often mentioned user with nearly 85,000 mentions
Community analytics help users find influencers
The hashtag #AntibioticResistance was tweeted 11, 192 times on the second day of
World Antibiotic Awareness Week 2017
Related hashtags submitted to Symplur during
World Antibiotic Awareness Week 2017