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 A relationship between two characteristics, such that as one changes, the other changes in a predictable way. For example, statistics demonstrate that there is an association between smoking and lung cancer. In a positive association, one quantity increases as the other one increases (as with smoking and lung cancer). In a negative association, an increase in one quantity corresponds to a decrease in the other. Association does not necessarily mean that one thing causes the other. 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.
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 is the information collected through research. 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?
We discussed some challenges we’ll need to address. Many people, when they consider social media, see it as a A way of expressing the chance of an event taking place, expressed as the number of events divided by the total number of observations or people. It can be stated as ‘the chance of falling were one in four’ (1/4 = 25%). This measure is good no matter the incidence of events i.e. common or infrequent. 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 The group of people being studied. Populations may be defined by any characteristics e.g. where they live, age group, certain diseases.. 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”.
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!
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!