SOME BASIC QUESTIONS
How do you get involved in something you have never done before? Where do you start? What do you need? How do you get help? How do you keep going in the face of adversity? How will you know if any good has come of it?
Taking up Running
These questions were just some of the myriad thoughts that swirled in my head when I began to contemplate taking up running as a hobby. This article is my attempt to reflect on the many similarities and differences between running and the art of active involvement in NHS research. I specifically use the word 'art' for involvement as it too often seems to require specific experience, specialist skills and abilities. Whereas with my running, there is little artistry about it and no previous experience is necessary.
I began my thoughts about running by considering the personal barriers that might stop me.
Maybe I am too old? I have never run anywhere in my 60+ years. Was running something I really wanted to do? I have never been a sporty or active person. Perhaps I am too set in my ways? I garden and have put on my boots for occasional wanders in the countryside but these have been the sum total of my physical activity.
Getting involved in Research?
I had the similar questioning thoughts when I first became actively involved in clinical research. I was never very good at science, I didn't know anything about research. What was it about? Would I be listened to? Would it make any difference? What might researchers think?
There is however a major difference between these two activities. If I put 'running' into a website I can get information, advice and support that is clear, understandable and accessible - even from the NHS. If I type 'research' I am overwhelmed with mainly academic references, a perplexing landscape and a lack of information, advice, support - even from the NHS. This is as equally confusing should I want to take part in a research study or become actively get involved with researchers.
Running offers me clear choices. Research still leaves me confused at times (Sadly, I DO know my way around the research world but when you try to help others you see too many of their eyes glaze over!)
Taking up the Challenge
I have come to realise that taking up new challenges is good for you and good for the activity with which you choose to get involved. Without people taking part in research studies there would be very little research. Without involving patients much of the research would miss the point of improving patient outcomes and getting more realistic end points.
The challenge I am contemplating is to tun a series of 5k races in 2015 to mark the twentieth anniversary of the diagnosis of my cancer. I have become so much more healthy since I have taken up running especially as I broadening my understanding of diet, other training needs and better equipment.
Our health and well-being are generally enhanced by being actively involved. We learn, we meet others, we develop new competences whether it is in pursuit of physical activity or seeking to help NHS research. Some of these are transferable skills others are new and developing competences.
A QUICK HEALTH CHECK
I run, yet I wouldn't call myself a 'runner'. I am actively involved in research yet I would never call myself a 'researcher'. I have now run my first 5k and came in the very respectful last place and felt as if I had won a gold medal. I have been actively involved in research for over thirteen years and am pleased with the progress yet taking up running has made me think more about how we help others to be part of our community.
It is not necessarily about great discovery in science nor is it about achieving great times and breaking records. It is about incremental improvements. It is about making practical changes to research and in my health. It is about getting actively involved, being part of a community, gaining a broader understanding, recognising the benefits of participation.
INFORMATION & SUPPORT
For both active involvement in research and active running it is about making sure people have the right support, in the right way and at the right time to enable and empower them to take part.
If I type 'running' into a general search engine then I get to look at a variety of sites, clubs, clothes and shoes. I can choose which those that best suit my needs and what I want to do. There are Apps for my phone that put me in control and maintain my own personal records of progress.
Where are the Apps for Research? Why do I have to wait for months to take part in a course or an event to find out what it is all about?
There is an even a stronger correlation between running and the NHS.
The running programme I choose is called From Couch to 5K http://www.nhs.uk/livewell/c25K/Pages/couch-to-5k.aspx It is actually available on the NHS Choices website and offers 6 programmes to help you take up running. Furthermore I can watch videos to help with Flex and Strength and download further advice.
I wish something similar would help me participate and get involved with research but if I type in 'research' in the Choices website it is not as simple.
AWARENESS & ACCESS
But first and foremost you have to know that you can get involved. The NHS Choices website is a good front door but it was a colleague, Jamie Spencer, who pointed me to the NHS Couch to 5k programme and the other apps that allow me to keep track of my fitness schedule.
Word of mouth, someone pointing you in the right direction, is crucial.
It is not one or the other - it is both. Unfortunately getting involved in research almost entirely reliant on people telling you about it unless you have a particular disease / condition or know about some of the many acronym organisations in a local area - so try out AHSN or CLAHRC for a starter.
Running is universal. I am not divided up into a runner over the age of 60 or someone who has had cancer until I choose to record that information for a race. Running is running. Involvement is involvement.
LEARNING & DEVELOPING
The NHS choices website also has advice and information about running better. It recommends other Apps to help. I use Endomundo as it uses satellite tracking to record my runs, has a diary where I can note my progress.
I have now joined my local authority run gym where after a short introductory session I am free to choose which equipment I
So, where are the Smart Apps that support my involvement? Where is the website that allows me to keep track of my active involvement in research?
Running clearly illustrates how people can be given information, helped to become active, supported in the way they run without having to join a group, a club or a committee. It is about using IT to support people and give them choices.
I am fitter and healthier although sometimes a little out of breath.