By Claire Whitehouse (@ClaireW_UK), Senior Nurse for NMAHP, James Paget University Hospitals NHS Foundation Trust (@JamesPagetNHS)

Published: 19 June 2019

#WhyWeDoResearch is a Twitter campaign that began in December 2014 as a way of introducing the research team at the James Paget University Hospitals NHS Foundation Trust to the local public through social media. The hashtag generated responses outside of the Trust and what began as a simple way to introduce the research team to clinical colleagues, patients, and the local public, gained momentum and attracted national and international attention.

Who gets involved?

To coincide with International Clinical Trials Day (20 May), #WhyWeDoResearch hosts an annual ‘tweetfest’; a collective of tweetchats at set times over a one-two week period. Tweetchats are hosted from several countries globally and cover a huge range of exciting topics including patient and public involvement, staff roles, values and impacts.

Every year I underestimate just how big the community now is, and the willingness of patients, public and staff in the healthcare arena to get involved in the tweetfest. 25% of this year’s hosts were first time hosts...many of those hosts had never participated in tweetchats before. There were a mixture of patients and staff hosting chats; some individually and others combined. With support, encouragement and a helping hand the tweetfest demonstrates how effectively patients can lead research focused chats.

A space to share, learn and challenge

#WhyWeDoResearch tweetfest has become a huge learning and sharing event for all, providing a space for open discussion. These discussions are essential to challenging ideals and notions which may or may not fit the modern world. This year I felt strongly about addressing the topic of payment for patients involved in research. There was always the potential for controversy over these conversations and the community did not disappoint. But challenge is good, it creates reflection and change and in this case many people were finally addressing the elephant in the room.

#Whywedoresearch has a reach of 23 countries and this year’s tweetfest achieved some incredible stats as well as some amazingly in-depth conversations – 1,164 people contributed to the conversations and there was a reach of >30 MILLION impressions (any interaction with the hashtag over the two-week period). Statistics were kindly provided by @WeGizmos and transcripts from each individual chat can be accessed here.

An inspiring and supportive community

The highlights for me this year were the people who, in the first few days, classed themselves as 'lurkers', and within a day or two were joining every tweetchat making fantastic contributions. I’m thrilled that #WhyWeDoResearch's inclusivity gives people the confidence to dip their toe in the research discussion pool.

One patient follower @lynn_laidlaw who contributed to almost every tweetchat also hosted her own tweetchat for the first time AND moved her own treatment to be able to do so. She provided inspirational challenges and thoughts as well as posing new ideas and touching everyone she was in contact with. On the final evening, people were given the opportunity to share their final thoughts and Lynn’s comment “Illness changed my life, but PPI has given me so much, not least the virtual friendship of everyone on here. Feel blessed” is just one example of why the #WhyWeDoResearch community has become so humbling.

Another wonderful #WhyWeDoResearch supporter is @WendyPMitchell who has written a book which describes her experience of being diagnosed with early onset dementia. She cites the #WhyWeDoResearch community as a lifeline for her when she has felt alone at home, or on brain-fog days where she doesn’t want to see people but can see her ‘twitter family’ by looking at her phone.

Rising to the challenge

For those of us who are researchers we must accept the challenges, treat them as gaps which have research potential, and professionally challenge in return. For those of us who are patients (that includes me - I was tweeting from a waiting room twice and having bloods done during a third), we should share lived experiences and continue to share and challenge ideas.

Organising #WhyWeDoResearch tweetfest and running it 'live' across the two weeks is tough - doing this whilst working, running a family and doing-up our house adds to the challenge significantly. Unfortunately, on the last day of the tweetfest this year I experienced a sudden and unexpected bereavement of a close family member - having #WhyWeDoResearch and everything that comes with it made that day a little easier to get through. 

Thank you

For those of you unaware, #WhyWeDoResearch is completely voluntary. Everyone involved - hosts, the community and national leads - all do it because they believe in the purpose; giving people a voice to say why they do what they do, and sharing research opportunities for patients, public and staff. I thank each and every one of you who participated. I may lead the community on a daily basis and host the tweetfest annually, but it wouldn't be the community it is without your unwavering support.