We know that it’s easy to become caught up in the minutiae of our jobs and overlook the research participants and their families, who should be at the centre of what we do. We thought we’d talk about that in this blog post.
Hearing his story helped us reflect on the contribution patients make when they agree to take part in research; and there were a lot of learnings for us as clinical trial professionals, around how we can strive to put patients first when we’re planning and implementing research.
We’ve written a longer blog post on our website where we talk more about this patient story and discuss the learnings in more detail, but we wanted to share some key learnings here.
- Research participants are real people
It’s important to centre participants’ well-being, for the benefit of patients and the research outcomes. The research team for the patient we heard about brought consistency among a stream of changing faces, and clearly viewed him as a whole person, which was really positive to hear about.
- The idea of a clinical trial can be frightening
When it comes to recruiting patients for trials, it’s important to explain in accessible language what the benefits are for the patient, the wider impact their contribution could have, and how their safety and welfare will be managed.
- Clinical trials can be precarious
Researchers may be working under very time constrained, complex conditions. For us, it’s important we remember that if a piece of equipment is not exactly where it needs to be at the correct time, this could have a serious impact on the research.
- Do we do enough follow up?
After the trial, our guest’s family were never informed whether the drug was approved. It was powerful to hear her talk about this, and it made us think about whether the research industry can do better at updating participants about their contributions to the drug development process.
We are involved in research because we want to help enhance world health together, and communities like #WhyWeDoResearch help us remember why we’re here.