By Olivia Fulton, Research and Policy Volunteer Network member, Asthma UK
Did you know that there are more ways of getting involved in research than just participating in a study? Neither did I, but now research involvement is a big part of my life.
I have had severe asthma most of my life although now in my thirties it has progressively become more difficult to manage, to the point I have had to stop working and give up playing all sport.
Through my involvement with Asthma UK I discovered that there is a strong desire to involve patients throughout the whole research process; to ensure that the research is relevant to them, that it is carried out with their best interests at heart, and that research results are communicated to the public effectively.
Being a part of Asthma UK’s Research and Policy Volunteer Network has been an incredible experience. I have helped researchers by being a co-applicant on a research project, becoming a member of a project advisory board and steering group, suggesting recruitment methods and strategies, suggesting ideas for specific research projects, reviewing patient information leaflets, the list goes on! I have loved the opportunities that have come my way and it is a surreal experience to be able to meet and speak to researchers who could potentially make my or someone else’s life better.
For anyone out there considering getting involved in research, give it a go! Do not let your doubts get in the way of making a difference. When I was first asked to comment on researchers’ work, I thought “This is their field of expertise, what do I have to offer?”. I should not have underestimated what I had to bring to the table. After meeting the researchers, I discovered just how much they valued my input and my experience of living with asthma.
It is vital that people with a health condition, and parents and carers of people with a health condition are given the opportunity to influence and participate in research, and there is plenty of evidence of the positive impact that involving people can have. It ensures that the right research is done, and that the research is done right.
No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique and valuable insights. Our advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well.
For more information on my involvement in research you can read my blog www.anonymousasthma.me where I post about living with severe asthma but also about my experience on the variety of different research projects and activities I have been involved in.
Originally published at: www.amrc.org.uk
A Few Questions for Olive:
What is the number one need for you as a patient advocate that companies fail to meet?
Collaborating with patients from the very outset of project conception. Often companies come up with an idea and then go to patients for their feedback however the main idea has already been set in stone and it is only adaptation to the idea that will be changed rather than the entire project idea. Come to patient advocates to work on ideas together as then the project or item will really be worthwhile to the patient group rather than an almost good product/ idea.
Is there something specific in your behaviour as a patient that has changes due to the pandemic?
I have been able to use other platforms a lot more. I have been able to convert support groups to virtual support groups and really utilise the features of each platform where before I will have just used the basics as relied on seeing people face to face for building relationships. I have also realised the value of ensuring your profile is always up to date as there is no face to face in person contact to build up relationships so for people you would have networked with this will now be done through your online presence.
What would you recommend as the best way for companies to reach out to patients? Is there a specific channel use that is still missing?
I do not think there is a specific channel that is missing but more the way in which things are communicated. There are a number of different social media channels/platforms or websites that are utilised by patients but each in a very different manner. Platforms such as LinkedIn are more professional therefore the language used by patients on there is more professional compared to Instagram or Facebook which patients tend to talk to their peers on and will sometimes speak more freely because the people they are speaking to have been in a similar position as they are. Companies need to be aware of the language being used on various different platforms by patients and adapt to that rather than use their own “normal” language. A way to do this is work with a patient representative who can help review patient facing material to ensure it is in a language that is understandable in displayed in an attractive way.
Olive FULTON is a patient, former nurse and Patient and Public Involvement Lead at the Asthma UK Centre for Applied Research (AUKCAR). Having originally studied Sports Science, severe asthma prevented a career in sport, a career change to nursing was also stopped short again due to severe life threatening asthma. Volunteering with AUKCAR Olive has been involved in collaborating with researchers, reviewing lay summaries and PhD proposals. Olive also facilitates SPEAK Asthma the children and young persons group attached to AUKCAR to ensure that the voices of children and young people are also heard. She is also a Consumer Champion for Cochrane UK, AstraZeneca Patient Partnership Program as well as a writer for the TEVA: Life Effects website as well as various other patient platforms. Olive also has a blog: www.anonymousasthma.me sharing her experience of living life with severe life threatening asthma and raising awareness about how severe asthma can be as well as her work surrounding Patient and Public Involvement. Outside of patient involvement and working with pharma Olive has a passion for lacrosse. A former player she now coaches a number of teams from school level, university and U19 Scotland Women’s team.