Other ways to get involved in sickle cell research

How patients can leverage their experiences to improve care and treatment

Last week, I shared that I’m conflicted about joining clinical trials that test potential treatments for sickle cell disease. Although I don’t yet trust the healthcare system enough to participate, there are other ways I can make a difference.

Medical progress may involve new treatments or even cures, but it can also mean improving the quality of available treatments by utilizing patient experiences in research. This is referred to as patient and public involvement (PPI). Because I don’t have to be a test subject in a trial, this is an avenue I’ve been able to pursue.

PPI enables a diverse range of patients with lived experiences to be involved in the development and direction of medical research programs. Patient involvement can greatly benefit researchers and the efficacy of their findings. This collaborative effort increases the likelihood that any changes implemented will improve the quality of treatment patients receive.

As a sickle cell patient, I’m passionate about improving care standards and treatments for everyone with the disease. Thus, I try to be proactive about teaching and working with medical personnel.

I’m currently part of a patient advisory group for a consultant hematologist whose PhD is focused on the acute care and treatment received by sickle cell patients in a particular part of London. We hope the study will help to identify excellent care practices as well as unhelpful behaviors, allowing us to share examples of the former while eradicating the latter. As someone who has lived out the realities of poor care, this is extremely meaningful work to me.

The benefits of PPI
Perhaps, like me, you are a sickle cell patient keen to contribute to medical research but apprehensive about the clinical trial route. I’d like to encourage you to explore PPI as an option.

PPI permits me to use all of my care experiences — both positive and negative — to effect positive change. It means my suffering hasn’t been in vain. For me, this brings immense satisfaction. There’s also something gratifying about seeing your influence play out in real time.

The team I’m working with is still quite early in the research process, but I’ve been able to offer insights that are paving the way for a positive turnaround in governance and ethical decision-making. My input is also helping researchers improve their approach to patient contact for the remainder of the study. It’s truly been a rewarding experience so far.