By Oluwafemi Ajayi, Gail Sickle Initiative
The word patient is generic and cuts across different health challenges around the globe. Fortunately, many continents have discovered suitable health outcomes that involve both pharmacological and non-pharmacological treatments and are starting to take a more individual, patient-centered approach. However, Africa is still lagging behind and I state the above within the context as a patient living with Sickle Cell Disease. At present, Sub-Saharan Africa has the highest prevalence of Sickle cell disease. If we have such high prevalence happening within the sickle cell community, one wonders what is happening within the cancer, diabetes, arthritis communities alongside other health conditions.
One of the most evident reasons for these inadequacies of good outcomes for patients in Africa is the absence of patient engagement and patient inclusion in health care research. Some healthcare professionals in Africa do not receive adequate training in providing patient-oriented care. For example, in Nigeria, a moderate percentage of the nurses are auxiliary nurses. Despite the fact that Google defines the word auxiliary as “providing supplementary or additional help”, auxiliary nurses in the Nigerian context means nurses that are trained through apprenticeship, rather than tertiary education, but often with insufficient supports and lack of standardization in their training program. Which indicates that the patients are part of these nurses’ training in the “art of medicine and patient care”. Through this route, these nurses, become experienced and rise to a high level in various hospitals and go as far as home service for patients. On the other hand, some of the doctors in Nigeria carry themselves as if doing patients a favor by seeing and treating them and this mindset has to change. To make things worse, in Sub-Saharan Africa, we have few organizations carrying out clinical trials and research where patients are included.
I go back in time to my first vaso-occlusive crisis after returning from South Africa. I was admitted to the hospital because I was reacting badly to the medications I had been given. My PCV (packed cell volume, which measures the percentage of red blood cells) had dropped to around 13 % and I had become dangerously pale. As the days passed and the doctor kept examining me for improvement, he asked me why I was bothering with my Doctoral studies when living with sickle cell disease, as according to him, sickle cell disease is a “death sentence” and I had very little time left. Imagine how traumatized I became, especially as I was trying to get back on my feet at that sensitive period! If a doctor has this mentality, then their patients are doomed.
What some of these health care professionals fail to understand is that patients play a huge role in health research, from sharing their lived experience to participating in clinical trials. In the sickle cell community, there is a particular drug that has been tagged as the “Lord and solution” of all sickle cell complications. Unfortunately, that is not the case as no two same patients are the same. I seize this blog to call on the pharmaceutical companies, researchers/academics and others, especially those focusing on patient inclusion, to come to Africa’s aid. The voices of the patients here need to be heard, they deserve to share their lived experience and participate in research projects that will give them better health outcomes.
Where lies capacity building and diversity in patient engagement and inclusion? What role do patient organizations play in reaching out to the patients? Are patients obliged to say more than they want to say or should they cower in the presence of the health care professionals that should bring succor to them? All these questions were on my mind as I attended the PxP conference, heavy laden with confusion. By the third day of the conference, I had more clarity, I had gained more knowledge and I had met more informed people. Can Africa have initiatives like PxP, where the patient’s voice is of great priority? Where we are made to understand that the lived experience of patients is one of the bedrocks of research in healthcare? We should remember that a story is best told by the one who experienced the story.
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