Clinical trials aren’t the only way to get involved in sickle cell research

How patients can leverage their experiences to improve care and treatment

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by Mary Shaniqua |

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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.

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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.

Despite the myriad benefits PPI offers to research and me personally, the process is not without difficulties. Because the study I’m participating in revolves around care, I’ve had to dig deep into my memory banks. That isn’t an issue when recalling examples of good care, but reflecting on negative or traumatic experiences takes an emotional toll. Digging up these locked-away memories prompts a whirlwind of emotions for me.

Fortunately, I underwent therapy for about eight years with a psychologist who understood sickle cell, so I believe I’ve done the necessary work to ensure it doesn’t have a long-term negative impact on me.

It’s important to note that PPI in clinical research is not an alternative to clinical trials as they pertain to the development of treatments. Although I’ve presented PPI as an alternative way patients can get involved in research, ultimately, PPI and clinical trials are two distinct and equally important avenues. Participation in both is necessary for advancements in sickle cell research.

Do you have any experience with PPI? What advice would you give to other patients who may be interested in participating? Please share in the comments below.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.


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