epatient – Health Care Social Media

Social Spotlight: Vanessa Carter

Posted on July 28, 2016 by Editor

This week it is my very great pleasure to interview Vanessa Carter. Vanessa is an internationally recognised South African Facial Difference and MRSA ePatient speaker. She is also the founder of hcsmSA which is an acronym for Health Care Social Media South Africa.

Hi Vanessa, can you tell us a little about the work you do.

VC: I am an ePatient advocate (Empowered Patient) from South Africa and I speak internationally at various events about facial differences, antibiotic resistance (MRSA) and web 2.0 from a patient perspective. I am an ambassador and advisory board member for Doctors 2.0 and You, Paris which is associated with the Stanford Medicine X conference. I am the founder of #hcsmSA which is a South African eHealth TweetChat and I am also in the process of developing it into a course locally. I am a panel advisor to EyeforPharma, an international event focusing on the future of digital pharmaceuticals, as well as an ePatient advisor to Docola, a virtual platform for patient engagement. I am a member of the Walking Gallery (an ePatient movement that focuses on participatory medicine and eHealth) and a member of The Society for Participatory Medicine.

Your work is impressive Vanessa. When did you start using social media. What prompted you to get started?

VC: I first used social media in 2008. I owned an advertising business for 18 years in Johannesburg which specialised in brand development for small businesses as well as search engine optimisation (SEO), online marketing and website design. I always believed in the value of networking in business and therefore was a member of several chambers of commerce. In some ways, I view social media as a virtual version of that.

Concurrent to my business, in 2004 I was involved in a severe car accident which caused many injuries. The most significant was a facial difference (disfigurement). I spent close to 10 years using the web to research the varying specialists as well as to understand the sequence of surgeries. The reconstruction required certain steps for it to be successful. During the course of these years, I experienced a scarcity of resources online which included doctor’s websites, patient education and patient stories which I could compare myself to. I suffered multiple complications and after my 7th year, a 3D printed implant became infected with antibiotic resistant bacteria (MRSA) which had to be removed, my progress was forced back by several years. I then committed my time to compiling my 600 page medical history into a 4 page summary and I emailed it around the world to leading facial surgeons.

One day, a light of hope shined on me, I received a reply and I was able to have a Skype consultation with a world-leading face transplant surgeon in the US who dealt with cases like mine daily. The direction that he gave me, empowered me to find the right specialist in South Africa. Ironically, the professor who performed the bone surgery was several kilometres away to where I lived, but I couldn’t find him because he didn’t have a website. Within 8 months, 3 surgeries and 5 doctors, my disfigurement had been restored to an acceptable state.

The game changer was having that direction so that I was able to understand my injuries and make confident and informed decisions going forward. This experience prompted me to diversify my advertising business and I shifted my focus to health care. I established a division which offered medical websites and social media to encourage online participation and improve access to patients in terms of finding local resources. I formed partnerships with companies like Nucleus Medical Media in the USA so that we could offer the integration of visual media like animated videos. Instant access to patient education on a physician’s site could reduce the need to search online and reduce disorganisation between doctor and patient, among other things. In 2013, I was nominated in the top 25 entrepreneurs in South Africa at the NSBC awards in recognition of the innovative achievement.

In 2013 I also created the FaceSA Project, which was a Facebook page to promote awareness for facial differences in South Africa. My objective was to promote acceptance for patients who were unable to receive corrective surgery, as there is limited support. Programs such as the Johannesburg Craniofacial Unit operate from private hospitals because there is limited funding to establish a multi-disciplinary team in the public sector, this inflates the costs excessively. Many people associate facial differences to cleft lip and palate, which is correct, but some more severe cases can be caused by rare disease, Cancer, congenital abnormalities, burns, trauma and more. Legal Acts also don’t state clearly when a facial difference is a disability and often patients lose their rights because they themselves are unsure. Another reason I created the Facebook page was to promote medical technology, where we lagged behind. I found a large gap between what I had researched online and what my physicians knew. I believed it was important to create awareness about that.

After reaching out to several Universities to curate articles for the page, I connected with an emerging technologies librarian called Patricia Anderson, she was wonderful to spend some time mentoring me and one day popped the big question “Have you tried Twitter?” I was a little edgy at first, because I perceived Twitter as a platform for celebrity gossip. I gave it a try and within several weeks had hundreds of followers. I was also invited to attend the #hcldr TweetChat which I woke up weekly for at 2.30am SAST out of genuine dedication to learn. I then connected with Symplur‘s, Tom Lee, one of the co-founders who spent time mentoring me about analytics and The Health Hashtag Project which I now use daily.

After several months of using social media to build awareness, I submitted the #FacialDifference hashtag to Symplur and started to build that patient community. I also submitted #hcsmSA (Health Care Social Media South Africa) so that I could diversify the work I was doing on a broader scale. This year #hcsmSA launched as the first South African TweetChat for eHealth. I have also started writing a series of eBooks in order to develop a course locally to train physicians and health workers how to use the web and social media correctly. I believe the slow adoption to participate is partly due to education and this could help towards accelerating that. As an example, I am providing a skills development workshop in October to a group of women in Johannesburg, at the Women Advancement Forum; these women want to grow their community projects in rural areas, the right web skills could make a major impact to their projects if someone takes the time to show them how.

Which platform(s) do you enjoy using the most?

VC: It’s difficult to choose a favourite, I like Linkedin, Facebook and Twitter for varying reasons. They each have their own unique set of tools and target different demographics. While one might be superior on a marketing level, another may be on a technical level. In terms of innovation, education and network building for eHealth, Twitter would be my first choice.

Twitter offers a range of tools which are useful:

Record transcripts, find influencers and access analytics in real-time; easily – thanks to Symplur
Follow any thought-leader as opposed to other networks which need their permission
Simplicity
Hashtag indexing makes it a powerful social search engine. Old conversations remain, unlike other social sites and conventional search engines
It offers a superior capability to make public announcements go viral faster (e.g. Retweets)
It offers excellent networking capabilities, you not only have suggested contacts matched up according to your demographic data, but also the ability to connect to conversations (using hashtags) and grow your global network
It offers useful tools like “lists” so that you can customise your newsfeed or manage your web research more effectively There are endless reasons, these are only a few which set it apart as the preferred platform for global eHealth.

Which topics interest you? Apart from #hcsmSA, do you take part in any other twitter chats?

VC: I have numerous interests; I am definitely a “tech-junkie” and some of my favourite experts for that are Eric Topol, Bertalan Mesko and James Canton. I also following genomics very closely, I spent some time this year in Edinburgh attending various lectures about genomics. Precision medicine is another area of interest, because I believe with all of the digital tools we have available now, if it were re-organised and re-designed right, we have a good chance of accomplishing that. In terms of TweetChats, I have taken part in the past in #healthXPH (Phillipines), Pharmaphorum which has a wonderful webinar series, #hcldr (Health Care Leader – Global), #PatientChat and #doctors20. Some of the chats have been difficult time zones, but I have made a point to listen to the on-demand recordings or downloaded the transcript from Symplur. I have recently launched the #hcsmSA TweetChat which I moderate and it is based on the same model as my neighbouring geographic communities (e.g. #hcsm, #hcsmCA, #hcsmANZ), of course focusing on South African health.

What advice would you give someone just starting out on social media?

VC: Be persistent to learn because the world is changing and we are moving towards a digital revolution, don’t get left behind in whatever area of medicine you are now in. Try new platforms for the sake of experience. Don’t be reluctant because of fear. For example, if you decide to give Twitter a try, you don’t have to tweet immediately, you can simply listen in by following hashtags and other users. Not everyone is built for networking. The value that social media holds goes beyond that, the most important value of understanding health 2.0 lies in the knowledge you gain, and it is much easier to access that wisdom on social media than it is when you are Googling away, choose one platform, learn to use the tools and expand from there. Don’t let time be the issue, if you Google and search in web 1.0, next time try web 2.0.

Finally, would you like to share a favourite quote with us?

“The most effective way to do it, is to do it” – Amelia Earhart

“The only way to learn it to try, to fail, and to try again, but we have to be bold enough to take the first step. The world isn’t waiting for us”

What a wonderful note to end our interview on Vanessa. Keep up the wonderful and important work you are doing and thank you for taking the time to share your experience with us today.

Follow Vanessa on Twitter @_FaceSA

#HCSM, E-Patient, Video

ePatients: The “e” is for engagement

Posted on March 24, 2014 by Editor

Doctors 2.0, E-Patient, Ehealth

Hangout With Doctors 2.0

Posted on February 22, 2014 by Editor

I had the pleasure this week of moderating a discussion on e-patient and physician relations for a Doctors 2.0 & You Google hangout.

The panel which included Denise Silber (founder of Doctors 2.0), Jamie Tripp Utitus (MS survivor and health blogger) and Renza Sciblia (diabetes consumer and health blogger) discussed the ways in which new technologies are contributing to the patient/physician relationship.

Relationships in medicine are as important now as they were in the past. The difference is that today’s technology allows physicians and patients to communicate on a different level. The panel listed some of the new technologies that are changing the dynamic between the patient and the physician, and how the balance of power has shifted. This led to a discussion on how some doctors view the empowered, digitally savvy patient as a challenge to their authority and expertise. Jamie suggests leading physicians gently towards a discussion on health technology, while Renza sees this as an opportunity to broaden the relationship between doctor and patient, fostering more openness and honesty in the relationship. She suggests that patients interview their doctors in advance to find the level of collaboration they are happy with.

Speaking to the numbers of doctors who embrace new technologies, Denise suggests that this is a multi-factorial problem, encompassing people skills and financial remuneration. Michael Weiss, listening online to the discussion, asked the panel for their thoughts on the future of medicine being the convergence of ehealth, mobile health and social media. The panel were all in agreement that this is the future of medicine, and spent some time on the important role that social media has to play in supporting and educating patients. Blogs and Twitter chats are great vehicles for healthcare professionals to learn about the lived experience of a condition.

The discussion ended with each panelist offering one piece of advice to physicians to help them prepare for a future where patients are empowered by new technologies. Renza’s advice is to just step in there and offers the reassurance that the majority of patient sites online are very well moderated and provide accurate information. This is not about replacing the doctor/patient relationship, but augmenting it. Jamie refers to Dr. Charles Safran’s quote that patients are the most underutilized resource in healthcare, followed by Denise quoting that the patient is the first member of the medical team. The discussion ends with Jamie’s call to patients to join the healthcare conversations online – to find answers and support and Renza emphasizing the peer-to-peer support and power of community that can be accessed online.

#HCSM, Conference, Digital Health, Doctor, E-Patient, Ehealth

The digital revolution and the era of the e-patient

Posted on September 25, 2013September 25, 2013 by Editor

I was delighted to have the opportunity to share the stage with Dr Kendall Ho, a practicing emergency medicine specialist and founding director of the eHealth Strategy Office of the University of British Columbia, at the Universitas 21 Health Sciences Group annual meeting held recently at University College Dublin. In a lively and engaging presentation Dr Ho spoke to delegates about how medical educators can embrace social media.

Also presenting was consultant rheumatologist, Dr Ronan Kavanagh, speaking on how doctors can use the tools of social media in their practice.

And my own presentation on the digital revolution and the era of the e-patient.

E-Patient

Get engaged: How to be a more powerful patient

Posted on July 29, 2013 by Editor

Patient engagement has been called “the blockbuster drug of the century.” Being engaged means being an active participant in your health care and health decisions. Often the results are better medical care with fewer hassles. This video with Eve Harris, Healthcare Writer and Patient Advocate covers tips for improving your experiences with the healthcare system and becoming more actively engaged in your own well-being.

E-Patient, SlideShare

E-patients and their hunt for health information

Posted on July 28, 2013July 28, 2013 by Editor

Some interesting data in the following presentation by Lee Rainie, Director of the Pew Internet Project, on how patients and their caregivers seek health information in the digital age and crucially how that information informs their healthcare decisions.

E-patients and their hunt for health information from Pew Research Center’s Internet & American Life Project

E-Patient

Patients’ Internet use a predictor for participation in their own care

Posted on July 3, 2013July 3, 2013 by Editor

Is there a significant relationship between Internet use frequency and the overall preferences for obtaining health information and decision-making autonomy?

Patients who use the Internet more frequently are more likely to embrace patient-centered healthcare efforts and participate in their own care, according to a study published this week in the Journal of Medical Internet Research.

For the study, researchers from the University of Texas at Austin, the University of Florida and the University of Maryland examined Internet use patterns of 438 people. They asked the group two questions:

Is there a significant relationship between Internet use frequency and the overall preferences for obtaining health information and decision-making autonomy?

Does the relationship between Internet use frequency and information and decision-making preferences differ with respect to seven different aspects of health conditions–diagnosis, treatment, laboratory testing, self-care, complementary and alternative medicine (CAM), psychosocial aspect and healthcare providers?

According to the researchers, the findings will be important for care efforts moving forward. “When medical professionals attempt to gauge how much information to provide patients or try to decide how much they should involve patients in medical decision-making, they may be better off if they base their decisions on patients’ Internet use frequency rather than age, per se,” they said.

See on www.fiercehealthit.com

#HCSM, Patient Empowerment

5 lessons Inspire learned from its 5 million posts written by patients and caregivers

Posted on May 21, 2013June 30, 2013 by Editor

Recently, Inspire passed a milestone: five million posts written by the patients and caregivers in its online health community.The sheer volume of activity in the community—about three New York Times’s—worth of words written around the clock each day—makes it just about impossible to read every word, but we see certain themes stand out.

Here they are:

Patients want doctors to treat them as partners. Patients expect their doctors to listen to them not only about their symptoms, but also about their own perspectives on their condition. To be clear, patients don’t want to play doctor, but many patients—especially those with rare diseases—become highly educated about their condition and have done research which they believe bears consideration. The asymmetry of medical information available to patients versus doctors is almost gone, and today any one of us can go online to learn a great deal about a medical condition.

Patients are less cynical about pharma companies than you’d think. Patients want the medical system to work for them. They want pharma companies to make the drugs that help them and their loved ones. When we started Inspire, we were warned that patients would be overwhelmingly negative about pharma companies. This is simply not what we see. What we do see is a lot of discussion about how to optimize treatment, and a genuine interest among patients to best to benefit from their treatments.

Patients are not online just to vent. In our experience, patients seek three kinds of support: emotional, scientific, and practical. Many patients get scientific support from their physicians and online encyclopedic sources. But they are also hungry for practical information to improve their health, and they gather a lot of this information from their peers online. In two recent Inspire surveys—one of psoriasis patients, and another patients with the rare disease neurofibromatosis—each group said the primary reason they participated in online groups was to research the best available treatments. Emotional support and empathy are important, no doubt. But many patients share crucial practical information that only fellow patients know.

Patient communities aren’t ‘soft.’ The notion that patient-provided information is less important or valuable than physician-provided information is wrong. Different? Yes. Inferior? No. One only needs to spend ten minutes in our ovarian cancer group, for example, to immediately realize there is a great deal of knowledge and benefit being shared among patients 24 hours a day. This is in no way less rigorous or serious than traditionally authoritative sources of information. What is clear to us is this: patients who want to educate themselves about their health seek multiple sources of information, and they are smart enough to weigh those sources appropriately. To suggest patient-to-patient information about treatment options and decision-making is not as good as other kinds of support is patronizing and simply wrong.

Patients are generous. Patients, even some who are gravely ill, give of themselves in online groups in profound ways. It is clear to us that patients want to help one another, and in doing so, many discover they help themselves.

See on www.healthcarecommunication.com

#HCSM, E-Patient