The Clinfield Conference provides an opportunity for research nurses, allied healthcare professionals and all research practitioners to get together in a formal setting. The Conference programme is put together with care to provide sessions to share good practice, things that worked and didn’t work, speakers talking about their career development pathway, patient advocates talking about their experience with research and how they can assist the researchers, debates and also invaluable time for networking.
I have previously been invited to attend this Conference twice by Kelly, who also leads our PPI Clinical Trials Group at Cancer Research Imperial. In April this year I received an email, from Kelly, asking if I would like to do a session, as a patient voice, for either a panel or a debate on the use of social media for recruitment to clinical trials. Of course, I said ‘yes’, put it in my diary and forgot all about it!
10:00-10:10 Welcome Professor Janice Sigsworth
10:10-11:00 Why clinical trials and the people who run them matter. Key Note Speaker: Mr Charles Sabine
11:00-11:15 Inspiring the next generation through student placements. Mary Harrison
11:45-12:45 The Great Debate: The use of social media enhances dissemination and engagement in clinical research.
Chair: Gordon Hill Debaters: Teresa Chinn- We Nurses, Matt Ballentine, Dr Les Gelling- REC Chair, Anna Wallace- Patient Representative
12:45-13:00 Considering a Masters in Research? My experience so far. Stuart Gormley
14:00-14:25 Stratified Medicine: the challenges and ethical dilemmas genetic testing brings to research. Professor Martin Wilkins
14:25-14:45 Can I retweet please? Health research recruitment and the Twittershpere. Professor Heather Skirton
15:15-15:30 Regret in patients with acute and chronic conditions recruited to stem cell clinical trials Katrine Bavnbek
15:30-15:45 Beyond Research Delivery to Design and Dissemination- Extending the Role of the Research Nurse Caroline French
15:45-16:00 Closing Remarks and Award Presentations Professor Christine Norton and Kelly Gleason
The whole conference was inspiring but none as moving as Charles Sabine’s presentation.
Charles spoke candidly about his career as a TV journalist where he spent many hours and years reporting from war-torn parts of the world. No doubt an incredible career and something that few of us would be brave enough to do. But then he spoke about something way braver than his time in journalism. He had the whole audience hanging on his every word and, at times, wiping a tear away. Charles’ father was diagnosed with Huntington’s disease (AKA HD). He watched as his father ‘disappeared’ before his eyes. From an intelligent, articulate and ‘alive’ man, he became reliant on others for everything. HD is a progressive and hereditary disorder for which there is currently no cure. Charles and his brother have had genetic testing and both tested positive. Charles’ brother, John, an incredible successful lawyer, is now battling this fast moving and progressive disorder. For the moment, Charles has no signs.
Charles, like so many of us when we are told ‘there is no cure’ ‘there is no research’ or ‘you’re unique’, uses his experience in journalism and as a son, brother and person affected by HD to a different use. He is now a spokesman for freedom of scientific research, and sufferers of degenerative brain illnesses (including HD). He has been talking about his experiences at conference such as this, raising awareness, rallying and organising groups of people affected by HD to speak up and get involved. He spoke of HDBuzz, Huntingdon’s Research News. He also spoke about The Huntington’s Disease Youth Organisation (HDYO) where younger people diagnosed with HD are able to get together in person, online, via social media to support one another but also to push for changes and research.
Charles’ presentation without any hesitation was moving. I wasn’t familiar with HD. I am now. But what I also see is the impact that a patient voice (albeit one from the tellybox) can have on improving awareness, patient care, support and, the everso needed research. Charles’ experience with HD is similar to other rare conditions and diseases and what Charles demonstrated was that by using social media, by using our voices we CAN make an impact. Research may not be within our lifetime nor may it make a difference to our own health but to KNOW that we have made a difference for future generations and that, particularly in the case of hereditary disease, our children or grand-children will have the benefit of our involvement now.
I felt for Mary Harrison, the next speaker on the podium. How could anyone possibly follow Charles’ presentation? She did, brilliantly.
Mary is clearly passionate about encouraging and enthusing the next generation. About engaging all new students in research so that it becomes part of their ‘everyday’ no matter which medical field they end up in for their career. Research should be second nature to consider for each and every person, patient and non-patient. Without research medical advances cannot be made. Healthcare improved and a better and longer quality of life gained.
It was wonderful to hear some of the initiatives and working methods that have been implemented and that Mary is championing. I hope that others attending the conference were able to go back to their workplaces and implement similar projects.
After a short coffee break, it was time for the Great Debate: “The use of social media enhances dissemination and engagement in clinical research”. I was on the stage! We had four debaters, 2 for the motion and 2 against. My job was to debate against the motion. The chair for this session, Gordon Hill, introduced the debate and asked for a show of hands for and against the motion. There was one lonely hand waving ‘against’.
Teresa Chinn, @WeNurses, presented her arguments FOR the use of social media.
Compelling arguments and we could see a great deal of nodding from the audience.
Dr Les Gelling @Leslie_Gelling was first to present his arguments against.
Again I looked out at the audience and saw nodding and acknowledgement of the points Les raised.
Matt Ballantine @ballantine70 stood next to argue FOR the usual of social media.
Last to speak was me. I questioned if you could really engage people with 140 characters and provide enough information for them to make an informed choice. I queried the use of acronyms to reduce the character size reminding the audience that patients and carers don’t yet know what these acronyms mean. I was also able to mention ‘Phyllodes’ in my short presentation 3 times… hehehe a room full of researchers have now heard of our rare cancer!
Without a doubt the debate was difficult. All four speakers are active users of social media and see the value of the medium for dissemination of information. Les and I had discussed before the debate how it was difficult to sound passionate about an argument you didn’t believe in.
In the summing up, Les did a wonderful job of putting doubt into the audience’s mind. About ethics, confidentiality, understanding, interpretation and audience.
There were some very interesting questions from the floor and even some examples of where the use of social media had worked already. Namely when recruiting young mothers to a trial via MumsNet.
Finally a show of hands from the audience to see who was now FOR and AGAINST the motion. Les and I had won the debate – there was now no longer a lonely arm waving but a large number in agreement with our arguments.
I must admit to despite winning the argument feeling a little disappointed. I am in favour of the use of social media for dissemination of information. However what was highlighted in the arguments and questions was that perhaps we’re not quite there yet. Not everyone feels comfortable with social media. Not everyone uses it. We’re not yet au-fait with using social media effectively nor do we know the true impact of using it. Social media is still in its infancy and as such there is still a great deal to learn.
It should be something that is used for some aspects now. It is somewhere that we can learn more and engage and encourage people to become active in research. It is somewhere that can clinical research trials can be advertised or links to recruitment programmes be discussed.
I think the debate was wonderful as it clearly made the audience think more closely about their use of social media. It will hopefully mean that it can be used as ‘part of’ a recruitment project but with consideration for confidentiality, ethics and understanding.
The afternoon sessions at the conference were fascinating. It was wonderful to hear from various people about their passion for research, inclusion, consideration of patient side effects and quality of life but mostly about the willingness to share with others their experiences (good and bad). I know that all those attending this conference will have left with a new understanding of some aspects of research and I’m quite sure many will have been implementing changes or looking at the way they’re currently operating to improve the research landscape.
I’m passionate about research.
It should be part of everyday conversation.
Sadly most of us only think about research when we or a loved one is ill.
Research is also conducted on people who are well with the use of surveys, spit or blood samples.
Research doesn’t have to be invasive or require the taking of medication.
YOUR involvement in research could make a difference in the future.