It’s January 2021 and it has become difficult to remember what life was like before the global pandemic, and more importantly, we have been forced to accept that life will not return to ‘normal’, for a while yet. The impact to humanity has sent the world into unfortunate chaos and tragedy, while simultaneously highlighting trends and views that we previously did not pay much attention to. Perhaps the most mesmeric consequences for me are a) how everybody is fixated on drug development whether good or bad, and b) the unveiling of the perceptions people hold of the Pharmaceutical (Pharma) industry.
As a Pharmaceutical Research & Development (R&D) professional, I have been fascinated by the opinions shared on social media, in articles, and even by friends and family when it comes to healthcare. One of the most prominent observations that I’ve made is that it’s like the world is looking at drug development and the Healthcare industries for a solution, but they don’t necessarily trust what they’re being told. These industries are constantly battling conspiracy theories and severe mistrust. They’re not necessarily making the connection they need to make with the real world, and it begs the question ‘is Pharma out of touch?’
Here’s my first thought: is the Pharma industry like a bubble, finding itself enclosed and at times isolated from the reality of the outside world? If so, this poses a critical issue when the work of drug development is intended to serve the world outside the ‘bubble’. Take the recent news of the success and subsequent roll-out of the Pfizer/BioNTech, Oxford-AstraZeneca and Moderna COVID vaccines, the Research and Development community has been overjoyed. However, when you listen to the opinions of family and friends external to that community, or perhaps observe comments on social media platforms (Twitter, Instagram or Facebook), many do not align with our enthusiasm. Comments doubting the credibility and intent of ‘The Vaccine’ are unfortunately quite frequent and that’s before the flood gates of hesitancy and reservations are open (with VERY good reason), as it pertains to the People of Colour (POC) and Black And Minority Ethnic (BAME) communities. For these communities, the sentiment and expression of mistrust is much greater. The dark history of medical experimentation in Africa and the horror of the Tuskegee Syphilis Study, albeit in the past, are still scary examples of racially driven unethical practices. Additionally, it’s not convincing enough for the vaccine to be rolled out widely, as proven and persistent racial health disparities cause constant clouds of doubt.
In the era of COVID, as someone who is wedged between the Pharma Bubble and living in modern day society as a Black woman myself, my reflections on patient, people or public engagement have highlighted some key questions:
1. Do we know what clinical research means to the public? Many people have very little idea of how trials work nor why we need them, much less view them in any type of positive light. That’s quite worrying, but not surprising. The terms and definitions of our domain are so familiar to us, that we neglect to speak in a language that others can respond to. This leads to miscommunication and misinformation. Education on clinical trials is only prioritised when we want to engage patients, but I think that’s far too late, and it’s a crucial factor in our struggle with patient engagement and recruitment. Our ambition should be to boost patient education in healthcare beyond clinical research. Consequently, this will improve health outcomes, as people will be better informed to make suitable health decisions, thus enhancing how they manage disease and treatment. In turn, people will begin to recognise clinical trials as a viable care option, becoming willing (and perhaps excited) participants in research, wanting to advance drug development.
2. Are our approaches to engaging with the public motivated by us thinking of them as patients rather than people? Many patient engagement strategies are focused on bringing patients to our world, rather than evolving our comprehension of what happens in theirs. From an operational perspective, we focus heavily on return on investment (ROI) and miss the opportunity to truly understand people’s needs and how to convert that into a measurable ROI. Other times, we attempt a ‘one size fits all’ approach. A perfect example of this is how diversity and inclusion in clinical trials is being addressed. Following the FDA guidance to enhance the diversity of participants in clinical trial populations, many organisations are charging ahead with efforts to comply with this guidance. I’ve sat in many conversations discussing how to reach minority patients where minorities are discussed as though they are a monolithic group. There isn’t a magic formula or specific method to get you minority patients in clinical trials and going down this path will only amplify the message that ‘Pharma doesn’t get it’. Understanding them as people rather than potential patients will lead to better apprehension of diversities, disparities, and underprivileges, shifting our focus to developing a genuine relationship of trust and inclusion. Following that, the diversification of the patient population in clinical trials becomes the natural outcome.
3. Lastly, and perhaps the overarching theme to my other observations: have our methods expired? We live in a time where behaviours and choices are influenced by what we follow and what we consume. Personally, I engage more with content that appeals to who I am as person. Does it appeal to the interests of my age group? Does it appeal to my experiences as a woman? Does it appeal to my experiences as a Black woman? Now more than ever, we’re witnessing industries becoming more creative and innovative with initiatives to engage their target audience. Spotify learns my listening preferences and suggests new music for me to try; would it not be awesome if we could do that to address unmet need? Amazon knows I like to read books by African authors and gives me some great reading suggestions; could we reach that level of maturity to understand a patient’s journey and provide them education materials. Could we learn to use Instagram and YouTube the way Social Media Influencers do to engage people? In our ‘Pharma Bubble’, we tend to recycle old approaches. We’re trying to make old techniques work, and not learning from people’s behaviours and motivators in the way other leading industries have, leaving us stuck trying to captivate an audience who aren’t really interested anymore. Too often I hear ‘that’s not how it works in Pharma’, to which I respond ‘but, that’s how it works in real life’. We all know our industry is highly regulated, and the nature of what we do requires us to work within guidelines and parameters that other industries are not challenged by, but the current times have reinforced that we NEED to modernise.
It’s time we burst our Pharma Bubble; people are more than patients. We need to address the growing chasm between our community and the outside world. One could argue that people will always need drugs and treatments, regardless of our approach. My argument is that we don’t own drug development, it’s a shared responsibility with the public. We enable it and partner with patients to drive it. Therefore, the speed and quality at which we can deliver novel treatments to people requires a greater responsibility on our part to reimagine and revolutionise our approach, diversify and expand our engagement, and empower the patients.
#pharmaceuticalresearch #clinicaltrials #clinicalresearch #patientengagement #trialdiversityandinclusion #diversity #bame #poc #vaccines #covid19 #drugdevelopment #patientretention #healthcareblog #clinicaltrialinnovationblog
References:
Turda, M. (2007). Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. Oxford: Social History of Medicine, Pg 1
Scharff, D.P., Mathews, K.J., Jackson, P., Hoffsuemmer, J., Martin, E. (2010). More than Tuskegee: Understanding Mistrust about Research Participation, J Health Care Poor Underserved, Pg 1
Harris, S.M. and Kelly, C.G. (2016). Patient Education in Clinical Trials and Throughout the Product Lifecycle. Reading: Medical Education, Pgs 1,2,3.
FDA Guidance Document (2020). Enhancing the Diversity of Clinical Trial Populations – Eligibility Criteria, Enrollment Practices, and Trial Designs Guidance for Industry. FDA.gov.
Kelly, S. (2013). Testing Drugs on the Developing World. British Columbia: The Atlantic, Pg 1
Mastroianni, B. (2020). Why Some Black and Latinx People Are Reluctant to Get the COVID-19 Vaccine. Healthline.com, Pg 1
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