{"id":1003,"date":"2014-12-04T15:23:36","date_gmt":"2014-12-04T15:23:36","guid":{"rendered":"https:\/\/blogs.bmj.com\/spcare\/?p=1003"},"modified":"2014-12-05T16:01:55","modified_gmt":"2014-12-05T16:01:55","slug":"palliating-social-media-a-seminar-workshop-at-the-macmillan-professionals-conference-in-london","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/spcare\/2014\/12\/04\/palliating-social-media-a-seminar-workshop-at-the-macmillan-professionals-conference-in-london\/","title":{"rendered":"Palliating Social Media – a seminar workshop at the Macmillan Professionals Conference in London"},"content":{"rendered":"

Dr Clifford Jones <\/a>a Macmillan GP Facilitator in Aneurin Bevan Healthboard summarises a workshop seminar he attended at a Macmillan GP conference in London.<\/em><\/p>\n

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Conference Twitter hashtag: #Macmillanpros<\/a><\/em><\/p>\n

What happens to our presence on social media when we die? And how do palliative care patients and professionals use social media? \u00a0These were some of the questions posed to a group of (mainly) GPs at the Macmillan Professionals<\/a> \u00a0primary care conference workshop titled ‘Can we palliate social media?’. For example, take a step back and think to yourself where all your digital photos are stored? How many different social media and\u00a0email accounts do you have? What will happen to your online presence when you die or while you are dying and unwell? The speakers at our workshop were experts in this field, James Norris<\/a>, a\u00a0social media strategist and founder of internet start-up\u00a0Dead Social<\/a> and Dr Mark Taubert<\/a>, a Palliative Care Consultant with an interest in social media developments in healthcare.<\/p>\n

The discussion moved, as you would expect in a room full of healthcare professionals, to how social media effect the way we interact with our patients. There was a great deal of variation of experience of using social media, from the semi-experienced to novices and reluctant participants. A collective shiver went up the spine of the audience when we were asked ‘do you know what people are saying about you and your surgery online?’ Because the truth is most of us don’t know. Should we find out, should we try to manage what is being said or at least contribute to whatever story is being told about us?<\/p>\n

Whatever your opinion is on social media, and their uses in healthcare interactions, you can’t completely put your head in the sand, even if you choose not to take part. As an example of one of our discussions on the day, should the doctor working on a Cystic Fibrosis ward agree to be in that \u2018Selfie\u2019, that a patient there may casually suggest to take, perhaps perfectly innocently, as part of their microblog diary of their treatment course? For many people it is perfectly natural to say hello to the world via Facebook at the beginning of the day, before verbalising the same sentiment to those they live with.<\/p>\n

And if your social media \u2018diary\u2019 is such an integral part of your life, then naturally it will be an integral part of any illness you suffer. Be it by communicating your experience to others via Twitter or Youtube, or even causing concern to your friends by your uncharacteristic absence from Facebook, for instance when you are very ill\/ receiving chemotherapy, as an example. Recent high profile social media campaigns by individuals sharing their experience of illness with the world has shown how this can have a positive effect on society as a whole, not just the individual’s own patient experience. (For example the\u00a0#hellomynameis<\/a>\u00a0campaign)<\/p>\n

But we also heard from Dr Taubert that there are those for whom a withdrawal<\/em> from a very active social media life means that they\u00a0may be\u00a0in quite a dark place mentally, and his own clinical interactions with patients reflected this. In fact, asking patients about their social media use (or disuse) during their advanced illness, could often be a starting point for significant discussions about how they felt about their image, and sometimes even provided a starting point to talking about death, dying and legacy creation.<\/p>\n

Many people live their lives partially through social media. And to some extent, it is postulated, these forms of self-expression can act as palliative social media<\/a>\u00a0(article <\/a>by Taubert et al); the natural evolution of this is that we will begin to tell the stories of our dying, our deaths and how we lived in the same way. Patients and their relatives will now routinely ask about accessing free Wifi services in healthcare settings, and not being able to offer these is becoming somewhat unacceptable, not just to younger people but also older patients with high internet use. Social media for some of us will provide the opportunity to leave a lasting message and legacy to our loved ones. Platforms like Dead Social can even provide a way to communicate important messages after we have died, and have executors who manage passwords, pages and planned postings\u00a0after our demise. Perhaps a form of advance planning on social media. For those of us who work in healthcare, and in particular palliative care, it is high time to decide on whether\u00a0we are willing\u00a0to be part of this communication revolution\u00a0in as much as we are already\u00a0part of\u00a0the lives and deaths of those we treat, or do we just \u2018log out\u2019 at this point?<\/p>\n","protected":false},"excerpt":{"rendered":"

Dr Clifford Jones a Macmillan GP Facilitator in Aneurin Bevan Healthboard summarises a workshop seminar he attended at a Macmillan GP conference in London.   Conference Twitter hashtag: #Macmillanpros What happens to our presence on social media when we die? And how do palliative care patients and professionals use social media? \u00a0These were some of […]<\/p>\n

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