Patient voice research has become indispensable in today’s drug development landscape. It shapes the way new therapies are designed, developed and delivered. However, one common and recurring challenge is an impediment to patient-centric innovation: ensuring diversity in patient input. We are not talking about diversity in a forced, checkbox, ‘we’ve-got-one-Black-guy-as-a-participant-crack-open-the- champagne’ kind of diversity, but real and sincerely considered diversity in the study sample. Without any diversity, even the checkbox kind, the outcome is usually that therapies are created that only partially address the needs of the populations they are intended to serve. Diversity is complex. Diversity is not easy to achieve.

What do I mean by ‘real and sincerely considered’ diversity? Well, we can conceptualise the complexity by imagining it as a fruit machine or a combination lock. Each spinning reel or dial represents one key dimension of patient diversity. So, when the reels align, we get a “jackpot” – a patient sample that authentically reflects the real world. On the other hand, you may have a sample that looks great on a surface level, such as an appropriate mix of cultural and ethnic backgrounds, an equal balance of male and female, and so on. Yet, if one dimension is missing, for example, all the participants being higher income, middle class, then the cohort is unbalanced and even skewed towards certain outcomes. The lack of representation of, for example, working class people, can result in bias and an incomplete picture of patients’ insights. This undermines scientific validity and health equity.

The Reels – or Dimensions – of Diversity

Reel 1: Demographic Characteristics

The most familiar reel is demographics. This means age, sex, gender identity, race and ethnicity and geography. But this is just the tip of the iceberg, and a far cry from middle-aged, white men and women from urban centres that usually predominate in a good deal of patient voice research. If studies included underrepresented racial groups, rural populations and gender-diverse individuals, this would add richer layers of insights. How does endometriosis affect a young Black woman differently than an older White woman? How does access to treatment vary between rural and urban patients with cancer?

Reel 2: Socioeconomic Status

Socioeconomic status is very overlooked in patient voice studies. Let’s face it: people from middle class backgrounds are more likely to respond to research recruitment drives. Yet income, education, employment and – in the US - insurance status all shape a person’s healthcare experience. A lower-income person with limited health literacy face very different challenges when compared to an individual with a higher income and education.

Socioeconomic realities are far-reaching: they influence everything from participation in a clinical trial to adhering to prescribed medication. People who have to work more than one job might struggle to attend clinical study visits, while lower incomes and lack of insurance might prevent a person from having follow-up care. These are people with the greatest disease burden. Ignoring them means that their voices are missing in the (ironically named) patient voice research. 

Reel 3: Clinical Characteristics

Clinical diversity is important too: disease stage, comorbidities, treatment history and how much these impact them in their daily lives can vary hugely, even within a single therapeutic area. Take type 2 diabetes, for example. A person only recently diagnosed is going to have a very different perspective about their condition and treatments when compared to a patient diagnosed years ago and who has multiple complications. Therefore, a patient voice study would need patients that include both extremes of the clinical spectrum. Otherwise, only a partial picture of patient insights is provided.

Reel 4: Psychosocial and Cultural Factors

Language barriers, cultural health beliefs, family dynamics and health literacy all influence how patients understand and manage their illnesses.

In cultures where family plays a key role in medical decision-making can mean that the patient’s voice is intertwined with that of the caregiver. So, you might need to include both in the patient voice study. Similarly, issues of stigma and taboo for certain illnesses might influence how openly a person might want to discuss details about their own experiences.

Reel 5: Factors of Behaviour and Lifestyle

This includes diet, exercise, substance use, patterns of medication adherence and digital engagement. All of these have an impact on how individuals think about health issues. For example, a person who is digitally savvy and tracks their condition with wearables and apps might interact with the healthcare system differently to someone who is on the wrong side of the digital divide. A smoker or a heavy drinker with COPD or cirrhosis, respectively, might face unique challenges with regard to their healthcare compared to a non-smoker or a teetotaller with the same diagnoses.

The Intersectionality Jackpot

When the combination of multiple identity factors come into play, this could be seen as the Intersectionality Jackpot. Each spin of the fruit machine – each patient recruited into research – brings a unique combination of these reels into alignment. This is where, I guess, the metaphor of the fruit machine shines… The intersection of diversity is where true insights emerge. This allows research teams to identify, report and act upon unmet needs.

Final Thoughts

The metaphor of the fruit machine reminds us that true diversity involves more than just ticking off a few boxes. It is about achieving alignment across multiple, intersecting dimensions. Without this, all you have is an illusion of diversity, when, in fact, key perspectives are still missing. A sample that looks balanced enough but lacks socioeconomic diversity or ethnic variation is still incomplete. Each reel of diversity needs to be intentionally considered and calibrated to reflect the real experiences of all potential patients and not just the most accessible or vocal groups. Achieving the Jackpot of Intersectionality would ensure that therapies are designed to serve the full range of patient experiences and address inequalities and underrepresentation in a meaningful way.

Thank you for reading,

Mark Gibson

Leeds, United Kingdom, March 2025