Sam Clark is a PhD student from the University of Manchester who has been working with AMRC as a Communications Intern for the past three months. Here, he provides us with some of his experiences and views about his time with AMRC.
I originally decided to apply for a placement with AMRC, so that I could learn what makes funders like the member charities of the association tick. Being an early career scientist, I thought this internship would provide me with knowledge of what funding bodies look for in a grant applicant, information which would be of benefit in the future. I have managed to a certain degree to obtain this knowledge during my internship; however it makes up just a small part of my experiences. My time with AMRC has provided me with a greater insight into charities, industry, academic institutes, the relationships between them, and the different issues that they face. Here are just a few of the key issues which I have observed during my time here, and my personal perspectives of these issues.
One of the early highlights of my placement was the workshop that we jointly hosted with NIHR, Getting the most out of clinical research. The purpose of the day was to provide delegates from our member charities with a better idea of the benefits of collaborating with NIHR in clinical research. We have received a great deal of positive feedback from those who attended, both from our member charities and the NIHR, and it was great to see people exchanging contacts and eager to follow up and form clinical trial partnerships with each other.
"Collaboration" and "partnership" have been the two words which I have heard the most often during my time at AMRC and I am glad to see charities and organisations from other sectors conversing and joining up to work together. In particular the marriage of charities and the NIHR, in my eyes, is near vital for medical research. Charities, with their close connection to patients, are ideally suited for setting the questions and aims of research, an aspect which has been recognised by the James Lind Alliance in the priority setting partnerships that they form. The NIHR network on the other hand has the expertise and facilities necessary for high quality research to be conducted based on these questions and aims.
Patient engagement and involvement
Another reason why I see the importance of the NIHR is that, being part of the NHS, this organisation has one of the best opportunities to include patients and the general public in research. There are many resources that we use in research, but not to the full potential. These include data, computational power, and people. I agree with AMRC that every patient is given the opportunity to participate in medical research, and I have known of many people who either have, had, or have known someone who had a condition who would have relished the opportunity to be involved in research had they had the opportunity.
Whilst in London I attended a question time style debate surrounding science policy that addressed many issues from the spending review to the effects of leaving the EU. Towards the end there was an agreement by many there that we must get more people into scientific carers. Whilst this is important, a career in research is not the only way that people can be involved in science. I think it is even more important that researchers engage with people and patients, and get them involved in scientific research. Doing so would not only result in a higher output of high quality research, but will also mean that when we come to points when we have to explain the importance of the sciences such as at a spending review or during a referendum, we will not worry so much about our efforts in promoting science and R&D as we seem to do now. We can begin to do this by providing patients treated by the NHS with more options to participate in research.
The last major event that I have been involved with during my time here is our annual conference which was held at the end of last month. The event was possibly the highlight of my time here, mainly because I was more involved in its formation than any other event. The day’s talks and discussions were also lively and thought provoking.
In the patient data panel discussion, I was moved by Professor Mike Pringle’s passionate address regarding the use of GP data and how it has not only altered public trust toward GPs, but has also made GPs wary about sharing data. I personally think the use of patient data will, with time become accepted by the majority of society. Similar concerns have been experienced with the coming of mobile phones and the internet, however as use increased and the benefit of these innovations was realised these fears subsided, and we now use both mobile phones and the internet without much apprehension. My worry is however that the trust issues surrounding GPs and patient data will not be so easily overcome.
The patient perspective
I also enjoyed hearing from Irenie Ekkeshis at the annual conference, who contracted Acanthamoeba keratitis (AK) from a poorly cleansed contact lens in 2011. In her address she described how contracting this awful infection had taken all the control that she once had out of her life. My research group back at Manchester has a big focus on detecting and preventing contact lens contamination, and it was good to see a personal perspective of the effects of infection from contaminated contact lenses. I was also impressed with her campaigning efforts, and what she has managed to achieve in such a short space of time. Since contracting AK she has been involved in two patient participation projects and campaigned for “No Water” logos to be added to all contact lens related products, an initiative which is now beginning to be adopted. Even more amazing still is the fact that the infection was active for a period of three years, meaning that she managed all if this on top of receiving treatment. She has already received big accolades for her work, so my praise will be just a drop in the ocean, but she has it anyway.
Another individual I would like to highlight for raising my intrigue during the internship is Stewart Cumiskey, Digital Media Officer for MS Society. He spoke to member delegates at our Communications workshop in October, about his creative uses of social media and in particular how he communicates using the charities twitter account. His informal attitude and the way he directly communicates with followers reminds me of the way in which public transport providers use twitter. His recently successful #MSin5Words hashtag also gave those without the condition, like me, an opportunity to understand how those with MS feel about the disease. Stewart’s efforts as Digital Media Officer for MS Society illustrates that people with MS, and in fact all people with a medical disorder, are not just case studies you see on TV fundraisers, they are complex individuals like everyone else. As campaigner Shana Pezaro, who has MS, says “I Drink, I Smoke, I Swear…”. Of course we all know that people with a disease or disorder have similar hopes, ideologies, strengths and flaws as every other person on this earth; it is however nice for a representative organisation to reflect this.
My time with AMRC has been informative and eye opening. Whilst I have fulfilled my original aim of discovering what charities and other funders look for in grant applicants, this has not been the main positive I will draw from my time here. My exposure to big data and the excitement surrounding this area of research has fascinated me.
My PhD project revolves around machine learning and its use for antimicrobial peptide design. I have therefore been very pleased to hear several speakers sing the praises of machine learning, particularly in connection with large datasets. The main benefit that this internship has provided me with is I know have a clearer idea of where I would like to go with my career, And I would relish the opportunity to move on to big data research when my PhD comes to fruition.
I will also take my experience of all the challenges, solutions and perspectives I have heard of during my time with the association with me and I will try and convey them to fellow research staff at Manchester, and pretty much anyone I have the opportunity to tell, so that they can gain a better perspective of the current landscape in the charity sector.