The #WhyWeDoResearch is a Twitter campaign that began in December 2014 by way of introducing the research team at The James Paget University Hospitals NHS Foundation Trust to the local public through social media using a “12-days of Christmas” approach. The core research team were asked to pose for a photograph holding a placard explaining in simple terms “why they do research.” This was posted to Twitter using the hashtag #WhyWeDoResearch. 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.
Social media brings a new dimension to healthcare research as it offers a level platform for discussion among patients, the public, and healthcare professionals. Patients are utilising social media as a tool to share experiences, and a small number of studies have found that patient voices can be stronger and more clearly heard when they engage with and lead on social media activities. #WhyWeDoResearch is now a global social media campaign that is part of this new dimension to healthcare research.
#WhyWeDoResearch is raising research awareness and opportunities for patients, public, and staff, and to provide everyone involved in research in any way, with a voice. The campaign’s website provides background through videos, articles, and events www.whywedoresearch.weebly.com
#WhyWeDoResearch is not about gaining influence or promoting behavioural change, neither is it a mere sales or marketing strategy; it focuses on opportunity, inspiration, and a passion for patient care. Since its inception in 2014 the campaign has evolved in to a community in its own right. With regular contributions from patients (individuals and groups), public and staff (all professional healthcare groups), schools and academia and wider afield (engineering, space and animal research), charities and commercial companies, it is a wonderful place to discuss, share, get involved in and learn about research. #WhyWeDoResearch has generated lengthy discussions as well as proving a positive avenue for demonstrating impact, advertising events, showcasing work, disseminating results and providing opportunities for collaborations.
The #WhyWeDoResearch community has over 400 million impressions (the total number of times a tweet has been viewed or interacted with). More than 45,000 separate twitter accounts have participated in the campaign, spanning 23 countries. Regular feedback shows (inexhaustive):
- a) patients have joined studies as a direct result of viewing the opportunity on the hashtag thread.
- b) companies have been able to provide expression of interest tweets, which have led to smaller sites achieving success in studies they may not have otherwise been able to offer their patient population.
- c) increase in the patient and staff voice through #WhyWeDoResearch events hosted locally and regionally.
- d) international collaborations and joint grant applications have been submitted as a direct result of the community.
- e) Patient and staff hosts of Tweetchats report increase in confidence and their own value and contribution to research.
Regular Tweetchats (hour long discussions about a particular topic) are hosted throughout the year by experts in the field of discussion, eg patients with a disease, or a researcher focusing on a disease area. Guest blogs are written by patients and healthcare professionals contributing their thoughts about the research arena whether something personal or an overarching topic generating further discussion. These are displayed on the community website www.whywedoresearch.weebly.com.
To coincide with International Clinical Trials Day, #WhyWeDoResearch hosts an annual ‘tweetfest; a collective of tweetchats at set timepoints over a week-long period. Tweetchat hosts are provided with a toolkit of materials that allows them to develop a title and set questions to be launched via twitter every 10 – 15 minutes within the hour. Those wishing to join simply follow the hashtag at the time allocated to the chat(s) they are interested in. The first #WhyWeDoResearch Tweetfest was hosted in 2016 following a tweet asking whether there was appetite for something on this scale. It has since become an annual event.
The 2019 #WhyWeDoResearch Tweetfest begins today (Monday 13th May 2019) and will run over two weeks. Tweetchats will be hosted from a number of countries globally and will cover a huge range of exciting topics. As always patients and staff are the running themes throughout, and topics will centre on patient and public involvement, staff roles, value and impacts.
Claire L Whitehouse is lead nurse for research at The James Paget University Hospitals NHS Foundation Trust, Co-Chair of the International Association of Clinical Research Nurses UK and Ireland Branch, Florence Nightingale Foundation Scholar (1010, 2913 and 2016) and originator of the #WhyWeDoResearch Campaign and Community.
Competing interests: The Healthcare Improvement Studies (THIS) Institute: Patient and Public Involvement and Engagement Advisory Board Member: Expenses for travel. Appointed March 2019 for a three year term, advising regarding PPIE strategy of the Institute, ensuring patient and public voices are heard.
Grant from the Esme Fairbairn Foundation and muscular dystrophy UK (due to receive imminently): Grant awarded for travel to America in October 2019 to disseminate work from The Whitehouse Report (the culmination report of a travel scholarship I undertook in 2017. The John Hopkins University will host me in Baltimore for 3 days, then I travel to Philadelphia to present the report and our workforce career pathway at The International Association for Clinical Research Nurses Conference over 3 further days.