Patient-centricity is one of the latest themes building momentum in clinical trial circles, but it is a concept many are still struggling to put into practice. Despite the fact that most people I have worked with are involved in clinical trials because they want to do good for patients, it is not often that we truly engage with the public in all stages of the process. From a practical level, this is not surprising, given the arms-length divide that has been assumed as necessary between industry and patients, and the technical nature of science inhibiting communication between researchers and the community. However, doors are starting to open with industry, and scientists are starting to improve in their ability to communicate their research in non-technical ways.
About this time last year, I had the pleasure of presenting a session at the ARCS (an Australian therapeutic industry professional development association’s) annual conference called “Toward Patient-Centric Clinical Trials”. I brought together a couple of consumers, a research site and a clinical trials network to talk about why we should get consumers involved more completely in the clinical trials process, as well as the benefits and challenges of doing so. I also invited a number of consumers along to listen to the session and add their thoughts, in case we missed anything.
There was lots of great discussion from both the speaker and audience consumers. One of the audience consumers, John, asked the speaker panel the following question “What do you mean by ‘value’ with regard to clinical trials ? How do you think ‘value’ is created ?”
I must say I wasn’t quite sure how to answer that. I personally believe the value in clinical trials is that they contribute to the body of knowledge, advance medicine and provide better treatments for people in the future. BUT, is that how the public defines how value is created in clinical trials?
David, one of the consumer speakers defined it as “Helping to achieve better quality of life, not just quantity of life”. And I started to think – How often is Quality of Life the primary outcome we are seeking to evaluate in a trial?
John added that “Value is created when a desired or required function is achieved. In health care, the desired/required outcome is, ultimately, that health-care consumers are better-off (health-wise).”
If we want clinical trials to add value to the public, then the public must be at the forefront from the outset in setting directions and priorities for all health-related services, including research. That is what it means to me to develop patient-centric clinical trials – adding the value to patients that patients want.
So, rather than assume I know how clinical trials add value to the public, I’d like to instead ask the public to share #WhyClinicalTrialsMatter to you. As a starting point, I asked some of my family why they thought clinical trials were important. It was not an easy answer for most of them, and the conversation demonstrated just have far we have to go to explaining exactly what clinical trials are. Check out the hashtag last year to see what they came up with.
Please share your own thoughts and pictures, either by tweeting #WhyClinicalTrialsMatter, or emailing us with something you would like shared.