Transparency
Transparency, like a glass butterfly, is being 'see through'. For me it is endeavouring to be clear and upfront about what I am doing in my research (PhD project). Qualitative researchers state this means we should be explicit, clear, and open about what we do and how we do it. Social media and websites or blogs are possible outlets, in addition to the academic transparency traditionally achieved through publication. But can you do this? How do you do this? And it it worth it?
As a Specialist Research Nurse over the past 8 years, I've read more protocols, patient information sheets, and GP letters that I care to count. So when it came to writing and developing mine there were certain things I wanted to ensure I did based on my experiences as a research nurse and the feedback that research participants had given me. My biggest goal was to keep my participants up to date with how the study they gave time and effort too, was progressing. I wanted them to feel valued and to find out what we discovered thanks to their participation. A thank you and results letter was a definite on my to do list. But I also was curious about creating an online presence for my study.
I decided I would create a website and social media presence for my research study. Allowing anyone to see how the study was progressing. The first job was finding out how I did this and then make sure it was part of the ethics application. But how do you get ethics for something like a blog where you are going to create content as the study progresses. So I asked a lot of questions to more senior colleagues and discovered that if you are posting more from an update point of view (what it is like to run the study or do a PhD) then as long as you have out lined your plans to the ethics committee then it should be alright. However, anything to do with actively recruiting needed to be put into the ethics application. In my ethics submission pack, I included multiple documents around my proposed online activity for my study. This included with proposed social media posts (recruitment milestones, major accomplishments, presentations of results, etc) writing in a vague way which would allow me some freedom to not be posting the same thing every time. I also outlined a strategy of how and why I was going to use social media and how I would create a #(hashtag) for my study. The final step was a plan or framework for the blog I planned on creating. I was worried I would get loads of questions about it as I left these documents purposely vague, but I had no feedback or requested changes for my blog or social media strategy.
SYMPACT blog went live once I had my full ethical and HRA approvals. I've aimed to have the content be clear and concise. The content on the purpose of the study is from my ethically approved documents. It also has short bios about the researchers involved and when appropriate I've put links to publications with simpler explanations to what the publication is about. The update blogs are a bit harder to write as there is not many guidelines on what you can and can not do on a blog from a research study perspective. I use the principles of GCP and GDPR to guide me. If I talk about anyone (e.g. the research nurses helping with my study) I ask their permission first. While there is much more that I would like to share, it is a tricky balance between being transparent and not publishing before I publish academically. So I find I write drafts and then wait until I have published before I post it online.
Does it work? Is it worth it?
I think it has. While I have yet to get any participant approach me because of the blog or social media, I wasn't really expecting this to happen. However, I have had positive feedback about it from other colleagues who have seen it told me that it was a good example of transparency in research. It has had over 550 views (in one year) from a combination of clicks from social media, google searches, and from the ISRCTN registration page. While this is far from 'viral' I am please as it is way more than the amount I thought I would get for a small PhD research study.
More importantly, I feel that it gives participants a way to keep up with how the study is progressing as I'm open and public about it. One of the most frequent complaints I get as a research nurse is that participants tell me that they never hear from the researchers ever again. While I have a 'Thank you and results" letter it will be a while before I send that as I have a year and a half to go before my PhD is complete. The blog and social media allow me to thank them and update them on how it is going in the meantime and to share any accomplishments I and they study achieve. As it is public they can do this completely anonymously without consenting to further contact from the research team.
If you are setting up a research study, I highly encourage you to put at minimum a social media strategy in your ethics submission. More researchers are doing this and in addition to the benefits to your participants and improve study recruitment (Storrar et al, 2015) If you are like me it will help increase your (and your study's) impact through increasing awareness of your research activity.
