“Curiosity… with a purpose”. Starting out together on health research through social media

I’m part of a group of people who have come together with a common purpose – to drive health research through social media. You can read about this initiative on the #HARTSofthepossible website, where this blog was first published. This blog is a reflection on the tweetchat we held earlier this month, to share our ideas and invite discussion.

“Share your jewels before they’re shined.”

Wise words from Deborah Bull (@BullDeborah), dancer, writer and now Assistant Principal (Culture and Engagement) at King’s College London, whom I heard speak at the British Science Association event ‘Culture Shock’. We’d come together to explore what’s possible when professionals look beyond their own discipline and culture to be inspired, challenged and provoked about how they engage with different audiences and approach interdisciplinary partnerships.

you can strengthen ideas by opening them up to others

Bull was talking about beginnings, the blank canvas. Those jewels? Don’t wait until something’s perfect before you allow others to see it and contribute. Be open; hold to your values, and recognize that you can strengthen ideas by opening them up to others. Get good people around you – old heads and new ones.

I was reminded of all this as we approached our first tweetchat about #HARTSofthepossible, offering our unpolished jewel for general scrutiny and inviting fresh ideas. We weren’t disappointed! Over 120 good people came together in this chat, to throw around our initial ideas and offer insights and possibilities. The importance of questioning, critical thinking, sharing, planning and acting were all stressed during the chat. David Barton (@Bartontd) shared this quote from writer Zora Neale Hurston: “Research is formalized curiosity. It is poking and prying with a purpose.” We will need not to lose sight of either curiosity or purpose with this project!

HARTS is all about Health And Research Through Social Media; so what does, and could, this look like? What might be possible and what obvious challenges do we face? Here’s a taste of what we discussed; very much a conversation starter – do let’s keep talking!

Bigger, faster, better connected…

Social media’s vast scope for sharing research, knowledge and experience and was emphasized, as were the opportunities for both dissemination and participation in research. Specific populations can be targeted through groups, hashtags and individual profiles. Communities like #whywedoresearch increase understanding and awareness and create knowledge networks. Research processes may be enhanced by social media in terms of speed, access, breadth and opportunities for collaboration. It brings new possibilities for data collection, such as through Twitter polls. Social media may help with designing research that is meaningful and can enable researchers and research participants to share their experiences. So far, so good.

Us and them?

Social media cups teapot

How do we achieve inclusivity?

We discussed some challenges we’ll need to address. Many people, when they consider social media, see it as a risk rather than a tool and source of opportunity. Policies that don’t allow for social media use and cultures that don’t see it as having serious purposes are problematic. We’re looking at methodologies that aren’t yet established. Social media for research lacks credibility and is an uncharted frontier for funding agencies, though these things are changing. Social media as an incredible tool needs to become a credible tool!

How do we achieve inclusivity, one of the core values of #HARTSofthepossible, when some people just don’t like social media; and can we use it to explore topics outside social media? We like the idea of tapping into ‘unfiltered society’ yet recognize that users of Twitter, for example, are a self-selected bunch and not necessarily typical of the wider population. It’s also all too easy to follow and engage with people who reinforce our views, creating an echo chamber.

More data, or (more) useful data?

We could fall into the trap of just gathering more data; we need to use data well to turn it into useful information. To do this, we must involve service users and other citizens. There’s a wealth of data shared on social media, but evidence of its value perhaps remains elusive. A question come up that challenges me all the time in my work, disseminating evidence through social media with the ultimate purpose of improving health. That is, “how do we translate those likes, RTs and twitter chats into clinical practice change and improvement?” Not forgetting that the ‘like’ and ‘retweet’ functions aren’t used consistently anyway, so we potentially need some research on this!

Suggested areas to explore included using social media for validation of results and theming or looking at trends. It was pointed out that all research methods have their limitations. Some things are particularly hard to capture; as nurse @ShazzaHudson pointed out, “it’s complex. Learning, absorbing, challenging in Twitter changes ‘you’. This enables and inspires in real life”.

Enablers

All social media can be leveraged to promote research! Making links between different digital platforms is important, turning engagement on Twitter into increased blog readership, for example. The support of influential national bodies could really help. We need to take social media to the late-adopters in health. Using social media to conduct research, we need precise and exemplary research design and a set of global principles for good research practice via social media. We’re trying to fit a square peg in a round hole, and need a new model of research methods.

There is huge potential for recruitment to research, not just because of social media’s reach but because people may be more willing to participate via social media than when approached in clinical settings. However, the issue of consent must be addressed, and establishing trust can take time; not everything on social media is fast!

‘Future-proofing’?

Can we ‘future proof’ existing tools, resources and methods? No! This was not felt to be a very helpful concept when we’re dealing with an ever-changing landscape; rather, adaptability will be important. Methods and methodologies evolve over time and we can influence these things. Good research practice via social media – we’ve glimpsed the future!

It feels like our jewel is starting to be polished a little! Together, the hope is that we can fashion it into something shiny and, best of all, useful.

You can find detail of the tweetchat here, the essence captured here in a haiku based on the tweet wordcloud, written by HARTS colleagues, Kim Manley and Carrie Jackson. When you allow cultures to merge, so much is possible!

Haiku

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Sarah Chapman

About Sarah Chapman

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Sarah's work as a Knowledge Broker at Cochrane UK focuses on disseminating Cochrane evidence through social media, including Evidently Cochrane blogs, blogshots and and the ‘Evidence for Everyday’ series for nurses, midwives, allied health professionals and patients. A former registered general nurse, Sarah has a particular interest making evidence accessible and useful to practitioners and to others making decisions about health. Before joining Cochrane, Sarah also worked on systematic reviews for the University of Oxford and the Royal College of Nursing Institute, and obtained degrees in History from the University of Oxford and in the history of women’s health and illness in early modern England (MPhil., University of Reading).

1 Comments on this post

  1. Hi, Thinking about it, it would of course be silly to ignore social media in all its’ forms, a way of reaching out to and listening to so many people has probably been sought by many for a long time. However I applaud many of your concerns and of course data for the sake of data is meaningless, however social media will I am sure provide much useful data, I would imagine trends can easily be spotted, and these may lead on to other things.
    Also the ability of social media to transmit updated information to HCP and to rapidly access the response has to surely be a major benefit of these times.
    Good luck, sounds like an interesting project.

    Medical Models Online / Reply

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