Public led Online Trials and the Lab I Call Home
23 October 2015
In this post, DPhil student Amy Price writes about her own student journey as well as her efforts to build a bridge between science, medicine and the public.
Public led Online Trials and the Lab I Call Home: An EBHC DPhil Perspective
We often hear about the disadvantages or merely the practicalities of working part-time at a distance DPhil. In actuality it is so much more. At Oxford in the Evidence-Based Health Care doctorate we can choose our own topic and run our own lab. We report to our supervisors and meet up with our colleagues for training and fun but we are on our own. Choosing this path can take you on the ride of a lifetime as you work to fulfill your destiny.
Years ago after a life altering injury I stated my mission was to build a bridge between science, medicine and the public. At the time my sole tool was familiarity with the need. I set out on the journey to find resources and landed at Kellogg and the University of Oxford.
I found people did not know enough to be informed about their health care choices. I knew from neuroscience that interactive applied knowledge in a supportive positive environment is the key to deep learning and I thought about clinical trials and making a way for every citizen to do research in a clinical trial on a subject of interest to them.
The University of Oxford, Thinking Campaign and my supervisor Professor Amanda Burls suggested sharing the idea around the world. In my project I have worked with people on every continent. At conferences people would show intense interest and then the question would come, “how much does it cost?” In the beginning I would brush this off with a cursory, “Are you paying for it?” but as time went on I watched projects and ideas fail because they were built on a foundation that refused to consider outcomes, impact and sustainability.
I have learned from my research that complex concepts only work when they are presented with a simple interface with a minimum of steps. My hero is GOOGLE, the utmost complexity wrapped in a white page with a single graphic and a text box. My plan to get there is still under construction. My map is the people I meet and the research I do. From time to time I will share the adventures.
One of the most profound learning experiences came from the INSERM conference I was invited to present at in Paris. The theme was “Health outcomes in an era of cost containment: Improving efficiency of interventional research: decreasing costs, increasing quality” It was rewarding to see our project appreciated and celebrated by academics, policy makers, researchers, students and the public. The training I have from Oxford and the support from the Centre for Evidence-Based Medicine team allowed me the luxury of not having to learn by experience through the life of hard knocks. The further insights I gained from INSERM were priceless and will save me time on this journey.
They shared about using N of 1 trials in regular research, how to use national health registries to save lives and how to make research accessible and more economical. There were new designs for cancer trials and ways to apply trials guidelines so new researcher would find protocols easier to write. Scientists shared about their experiences with completely online trials. We shared ideas, dreams, triumphs and disappointments. It save time to work with people who think, share and care.
As an extra bonus it was our wedding anniversary and our first trip to Paris. Who says research can’t be fun! The picture below was the INSERM group.
I want the best for us all on the journey through life. My message is: Refuse to let other people define your boundaries and enforce your limitations. The seeds of greatness are on the inside of you and they are waiting to be birthed. Hold unto your flexibility and sense of humour…you will need it on the ride of life! It is seldom a smooth ride but you can be the driver. There will be falls along the way but the difference between a success and a failure is choosing to get up one more time in whatever way you can!
Here is a short slideshow about our project. Please do contact me through our website http://ithinkwell.org if you are interested in learning more or getting involved. I am also on Twitter @AmyPricePhD