Trusted advice, support and information: harnessing the best bits of social mediaKnowledge
'As healthcare professionals, within our remit of education and advocacy, we must ensure that the right outlets and social media channels are being promoted.'
Ciara O'Meara, a college lecturer at the National University of Ireland Galway (NUIG) wrote this statement in her intermodule project within the MS Foundation MasterClass in 2021 in her previous role as a clinical research nurse. She developed a social media-directed resource tool for newly diagnosed patients whilst she was based at University Hospital Galway, with the aim of minimising and discouraging the use of 'Google' searches and to support MS Clinical Nurse Specialists with information and resource provision.
We interviewed her to find out more about her motives for developing the tool, its impact locally on both people with MS and staff supporting them, and her hopes for the future.
A unique perspective
Ciara is in a unique position as a clinical research nurse as she also lives with MS herself, and it was her experience of both being a newly diagnosed patient, and being a healthcare professional which led her to develop this project. She discussed her diagnosis 12 years ago when social media was in its infancy and much of the resources available felt aimed at people older, or further along in their journey with MS, than she was.
'The resources were dense packs of information, the groups were for an older generation at more advanced stages of their disease. Where else do you go? to Google. I would never tell patients to look at Google but, there I was, doing just that.
As social media has evolved I've gotten involved in some fantastic groups that take away that feeling of isolation, that make you feel you're not going through something alone. I found myself wishing that had been there when I was diagnosed - and wanting to make sure it was there for others, today.'
Ciara talks about her positive relationship with social media as a support in her own journey with MS, particularly things like the Shift.MS buddy system and MSTogether, and how she pondered the best way to raise awareness of these spaces which can be reservoirs of connectivity and information, to people with MS who are recently diagnosed.
'When you're given a big pile of dense literature, you don't want to read it. You don't want to know. But the same information, in short, concise sentences which open with 'Starting Tysabri - any advice?' and the reams of encouragement and practical help that comes from that, things like 'take the day off work afterwards' - that is so meaningful to someone feeling unsure about starting a therapy.'
Ciara developed her simple tool in collaboration with a variety of different people from different walks of life, and living across the globe, but all living with MS.
''Focus groups' sounds formal and official, I know, but really it was so informal. I'm on so many WhatsApp groups, - ones that are local, ones that are people all around the world - and I'm connected to so many people by email too… I used these channels to share my idea, and people were so positive.'
In liaising with other people living with MS via social media, Ciara developed her simple tool, a visually appealing list of trusted websites and social media channels for people with MS to get information and support. It was feedback from individuals which led to the order that the sites appear in the tool.
'People came back straight away with Shift.MS and MSTogether as the ones to put at the top to help people who are newly diagnosed to connect straight away… I think the sooner you can get connected into trusted sources of information, the less likely you are to Google it…'
Ciara was also surprised to find that this tool had a significant use beyond those who are newly diagnosed with MS.
'It was interesting that people diagnosed 12-15 years ago who were providing feedback about the tool were coming across resources they weren't aware of. Even though the focus is on newly diagnosed people, these resources can be helpful to anyone with MS - and to healthcare professionals too.'
Talking to her local MS nurse about the tool, she discovered that there were resources being signposted towards that the nurses were unaware of too, things like the MS Trusts' series of videos, and MSTogether as a trusted form of social media for people with MS.
'That these sources can be trusted from my perspective as a healthcare professional, and valuable from my perspective as someone living with MS, I think really helps give credibility to the tool as something trustworthy and useful.'
Ciara's current role is in lecturing rather than clinical practice, so she has needed to be creative about how to utilise her tool since completing the project last December.
She has shared it widely in an informal capacity through the social media channels she used to develop it, and has heard from individuals who contributed that they are sharing it informally too, taking advantage of the mass network that social media provides.
Regarding use of the tool in clinical practice, Ciara has been talking to her own MS nurses about what this could look like.
'A print out of it will just be consigned to the paper pile or thrown away inadvertently. We've been talking about maybe making it into a magnet so it's easier to keep, can be stored somewhere visible and be a reminder that the information is there when the person's ready.'
She has also been discussing the best timing of giving the tool out to someone who i newly diagnosed. She is very aware that a space of a few weeks might be needed to process the diagnosis before someone is ready to seek information whilst leaving it too long could lead to an unhelpful Google episode.
'We're thinking about maybe not giving the tool out at the point of diagnosis but waiting for their next appointment which would ideally be a week or two later, after they have been given time to process the diagnosis and they're in the right space to investigate what it might mean.'
In the meantime, Ciara is keen for the tool to be as useful as possible, for healthcare professionals to draw on the information so that they can signpost confidently, or to be used directly as a tool to share with patients in clinic, via support groups, or elsewhere.
'MS nurses can feel concerned over directing people to the 'wrong' social media space but I hope this tool can give reassurance over that signposting. This comes from recommendations for both patient and professional, and that gives it a certain credibility.'
Ciara has given permission to share a pdf of the tool, to be used by healthcare professionals or accessed directly by people affected by MS:
Find out more about Ciara's project: Navigating MS Through The World of Social Media: Steering Away From Dr. Google
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