Social Media and Pain are now friends.

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There is no reason in the world anyone would want a computer in their home. No reason.
Ken Olsen, Chairman, DEC, 1977

‘Social media’ is the gestalt of our societal mores. Its lexical ambit is quite wide. The byzantine array of platforms on which it is played out too could be bewildering. It is akin to the undulating drone of cicadas buzzing in the densest of forests. My exploratory urge to pick out the rhythms of the multiple buzzings was rooted in my fledgling desire to utilise it for advocacy efforts. To spot the harmony in the rhythm would need a lion cub. Contemplation, awareness and agility were a prerequisite to stave off hunger. I was a house cat. Content with the knowledge that dinner would be served on time, whether I catch the mouse or not. The beginning of the attempted metamorphosis was a Sisyphean journey. I felt at worst a Schrödinger’s cat and, at best a Pavlov’s dog.

Relationship status: It’s complicated
In India, issues of pain advocacy are best left to those who did not aim for the academic stratosphere, thus triaged to professional organisations, patient groups, social workers and religious organisations. The consequence – in the internet, under the rubric of ‘Alternate Medicine’ or ‘Holistic Medicine,’ manifold vested interests operate; touting commercial nonsense for the management of pain. 80% of internet users, or 59% of U.S. adults, looked online for health information. Pain sufferers would like to know ‘what is wrong?’ and ‘what to do?’ Some have gone back after consulting me, to check if I knew what I was talking about. Some have come armed with Wikipedia, Google search, and unsolicited emails peddling herbs, flowers, pills and potions. India has recently been crowned the ‘spam capital’ of the world. For moral and ethical reasons, the credulity and gullibility of the natives are tested alongside global netizens. Twixt Tweedle-dum and Tweedle-dee!

Facebook, because time isn’t going to kill itself

The central tenet of social media is to engage others in conversation. It’s the tittle-tattle of life that makes the world go round. We are social beings, and our world is cocooned in the interests and minutiae of everyday social life. From business contracts to bumbling poetry, a social context exists for all written works. If only human pain could be made intelligible through social media, it would be the apogee of technology. A billion people simply cannot be wrong. That’s the number of active Facebook users , as well as India’s population. Twitter, a fast growing micro-blogging site, where 140 character messages stream by as thoughts, ideas or interesting articles, is another powerful platform. WordPress, Blogspot, Posterous, Tumblr, Flickr, websites and countless other idiosyncratic variants exist. Kindergarteners learn on iPads. A new member joins LinkedIn every second. YouTube is the second largest search engine. You just have to be where your potential audience chose to be. At times I have felt like an Indian Oscar Wilde suffering from too many parties.

Good God and 4 other friends like your status

Social media is hard to describe when it is the ocean and we are the plankton. At its depth, it is about people, relationships, and communication. 41% of patients look for medical content from social media sites and 94% of those patients turn to Facebook. 76% of patients trust peer recommendation. The need to congregate, to collaborate, to commune, drives humanity at a basic level. The traditional word-of-mouth dissemination of information on social occasions has largely been replaced by social media. Empowered with information and knowledge, a genuine intercultural polylogue takes place through pain self-advocacy groups. The increasing visibility of pain related issues in the community has given patients the courage to assert their interests, to express their desires, and to speak up for their rights. Physicians leading an anchoritic social media life would be surprised to find their online reputation written for them. We are early adopters of enabling technology, but languid to use it to communicate and collaborate effectively. It would be a Bergmanesque tragedy (OK, not quite) to show blithe disregard to the conversation about us, thereby missing out on redemption.

Hard Labour on Farmville!

As a collective chronicle of humanity, social media lends itself to cross-cultural curiosity. In India, both cultural homogenisation (mainly Americanisation) and heterogenisation (new ideas appropriated to fit with the cultural horizons) co-exist. One would be wrong and perhaps Precambrian if the term ‘going viral’ conjures up images of computers crashing. India had perfected ‘going viral’ through mass forwarded emails (mainly of the Divine Wrath variety) well before the wet-eared geeks at YouTube got wind of it. A combination of Google Alerts (content change detection and notification service), Google Reader (checks favourite news sites and blogs for new content), and aggregating platforms such as Hootsuite & Tweetdeck could be used to synthesise and share information. It works as a networking amplifier, where a single message could be populated in multiple social media platforms. The vast and enthusiastic audience thus garnered might be interested in recent advances in pain and a meaningful evidence base for their treatments. Furthermore, it helps simplify the complex, convoluted healthcare system, so that pain sufferers could use their clinic visits effectively and efficiently. In social media, elegance and fastidiousness endears us to patients; not Svengali like persuasive skills.

Pain is new to facebook, you should suggest people he knows

The Pareto principle of economics (80% of the effects come from 20% of the causes) holds true for social media. Thought leaders and key influencers wield the baton in this symphony. Journalists, celebrities and elected representatives are the conductors. They do not always, from their exalted positions, communicate with upstarts. One wouldn’t expect Beethoven to play commercial jingles either. Developing a targeted media list of local news outlets, radio talk shows, morning programs and specialty blogs would help surge our efforts. When developing stories, journalists assemble information from wide ranging sources, including blogs. A well written blog which captures memories, images and feelings might pique their curiosity. A national newspaper once contacted me for an article on cancer pain, leaving me like a captivated cherry being dropped into a bowl of covetous ants. Mind you, those ravenous ants too could be going around on a Möbius strip trying to break out of monotony. Importantly, the efforts could be synchronised with a network of pain advocates and professional organisations such as IASP, to serve as a voice for people in pain.

You have unread messages

Just as rational thinking and severe pain do not go hand in hand, the enormity of the task in social media might cause restless dissatisfaction that have us oscillating between a variety of preferences. It takes considerable discipline and time to get the advocacy efforts off the ground, starting with registering in different platforms. Technology has made it easier for us to set up our own social media presence, but we still would have to write and communicate. Then, there is the fear of negativity in doctor review websites and possible public relations disasters. Blog content typically does not have a peer review process. Editors with self-assertive arrogance, and neither deliberation nor judgement, could post content instantaneously, overseeing accuracy. Glaring mistakes with exuberant theatricality come to light after the content is transmitted through multiple channels. The tumultuousness of the worldwide web is such, just as anyone could publish material, anybody could modify or plagiarise it too. The ephemerality of internet publishing warrants a scrupulous watch against content which is unfocused or not used judiciously. Beginners notably might feel frustrated and whipsawed by the lack of tactical guidelines for negotiating social media and sharing healthcare information. In U.S, The Health Insurance Portability and Accountability Act (HIPAA) and its regulations protect the privacy of an individual’s health information. Reticence is a virtue inasmuch as privacy is concerned.

Control your default privacy

To the extent that we are healthcare professionals, our observations are refracted through the prism of theory. Within the dispassionate carapace we outwardly present, is the axiomatic truth of a helpful soul. Despite the refinements of culture, that is where altruism resides. No stiltedness. No superficiality. Social media permits our patients to have a peek at it. It helps bridge the gap between patients, physicians and healthcare organisations. Engaging safely and ethically with our audience along with curating on-line content is our social responsibility. Educational materials such as short videos, infographics and e-brochures presented with clarity and candour are invariably cherished by pain sufferers. ‘The universe is made of stories, not atoms,’ poet Muriel Rukeyser proclaimed. Everyone has a compelling story to tell. Their prosaic and ploddingly unimaginative exterior (mine is one), might belie their benevolent and warm experiences. Enabling our colleagues and staff members to contribute does wonders to the espirit de corps. Certain avoidable misadventures in social media suffer the Parisian ‘c’est un scandale.’ What wouldn’t be discussed in a hospital elevator, shouldn’t be published – the ‘Elevator Test.’ Behests in social media, inconveniently, could range from banal to the divine. One would be ill-advised to accept a patient as a ‘friend’ on the personal page. When social media activity is work related, letting the employer know beforehand is prudent. Groping for the right words, when reprimanded by the employer for indiscretion, could thus be avoided. A disclaimer and a comment policy is indispensable. I prefer Plain English, you might opt for Legalese. For an ink squid, chameleon is an amateur.

Pain and 3 other friends changed their profile pictures

The brain’s 90 billion neurons linked by 100 trillion synapses far surpass the web’s 20 billion web pages connected by a trillion links . And, that’s only the individual. Collectivity is the driving force of human advancement. When in pain, quixotic thoughts seem perfectly reasonable. Wisdom is possible too. On closer inspection, we could decipher that the wisdom is borne out of healed pain. Social media has helped chisel away the cultural parochialism and the structure of expressions which existed previously. It is a florilegium of stories, poems and songs of pain sufferers. As a person of science and a champion of patients’ rights, our role in social media is to distill these into a lucid narrative. More than stories, pain sufferers are looking for an interactive experience – a propitious experience of unprejudiced listening, attentive reassurance and hopeful optimism. Not to mention their yearning for recent scientific advances, which might alleviate their predicament. Erudite physicians understand these intangibles, and increasing number of them are appearing on the digital media stage. Pain sufferers need a political voice too. The incongruity between healthcare and its bureaucracy and politics has driven a chasm between the provider and the benefactor. Social media, by engaging, educating and empowering our patients can provide an emphatic voice to their rights to pain relief, and grapple back the symbiotic relationship we once enjoyed and cherished. The innovative resourcefulness of social media has engineered a Pygmalion effect in health advocacy. Other specialists have taken to social media with aplomb. Among the Ferraris of heart surgery, Bentleys of plastic surgery, and Jaguars of brain surgery, mine is the Lada of pain medicine. It is the interior exuberance which counts. My very own Faustian bargain.

(Palanisamy Vijayanand commented on his own status)

The article appeared in the British Pain Society’s Spring 2012 Newsletter.

Dr. Palanisamy Vijayanand

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FCARCSI, DPainMed (RCSI), MSc (Pain), FFPMCAI, FFPMANZCA | Hyderabad, India

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