In the last article, we established that the Patient Voice agenda in the drug development process rests on the assumptions of patient-centred care and patient empowerment. This article examines who is potentially left behind and underrepresented in Patient Voice research. It also argues how patient empowerment is forged through clinical contact points in primary and secondary care, where engagement is carefully orchestrated by the clinician. This is ‘empowerment-on-their-terms’ even for people who would be amongst the demographic regarded as ‘empowered’. What, then, is the true nature of patient-centred care and what repercussions does this have for Patient Voice research in drug development?

Who is typically not empowered?

We argued that the ‘empowered patient’ attains higher education and is in a higher income bracket than the rest of the population, draws on more socioeconomic and cultural capital that other sectors of our societies do not possess. This means that the majority of the population – the vast majority – are excluded from this.  Unless extensive diversity is built into the design of Patient Voice research programmes, then only a tiny part of the population is going to be captured. The majority of people interviewing, analysing and writing up Patient Voice research are also from a similar demographic: above average income, higher education with similar levels of socioeconomic and cultural capital.

Consequently, this kind of Patient Voice is only seen, collected and distilled through the prism of privilege. ‘Like’ interviews ‘Like’. ‘Like’ analyses data from ‘Like’. ‘Like’ disseminates insights from ‘Like’. This is a very narrow focus and could distort Patient Engagement in the drug development cycle as a whole. This is why it is vital to have a diverse cohort: not forced (for this, read ‘tokenistic’), box-checking, ‘doing-it-because-you-have-to’ diversity, but diversity that is naturally occurring in our societies.

Vulnerable populations are typically not empowered. This includes marginalised communities, individuals with low socio-economic status, racial and ethnic minorities, and those with limited healthcare access. These groups often lack the information, resources and support required for empowerment.  People with cognitive impairments, such as cognitive disabilities, mental health conditions, and neurodegenerative diseases may also struggle to articulate their experiences or participate in decision-making. This usually results in their underrepresentation in research despite their valuable and vital insights. Older adults face challenges like mobility issues, sensory impairments, and cognitive decline, which hinder their active participation and ability to provide informed consent.

Then you have low health literacy which further exacerbates empowerment gaps, affecting about one in three adults in the USA. Factors contributing to low health literacy include lower educational levels, language barriers for non-native speakers, cognitive or mental health issues, and cultural beliefs that influence understanding and engagement with health information. There is a laundry list of impacts of low health literacy, leading to misunderstandings, medication errors, poor healthcare utilisation, delayed treatments, higher hospitalisation rates, and increased healthcare costs.

Additionally, complex written materials and insufficient time for explanations in healthcare interactions make it difficult for individuals to comprehend and act on health information. Ultimately, this worsens health outcomes and self-care practices. If health literacy is a prerequisite to empowerment and empowerment is an assumption, not only in patient-centred care, but also in the Patient Voice agenda, then this means that one-third of Americans are excluded.

A cruel, stage-managed illusion

Besides, patient empowerment can be a cruel illusion anyway. If you take a microscopic look at the inner workings of doctor-patient interactions in consultations, you will see that the doctor only allows patient participation to a limited extent: this far, but no further. Beyond that, it is still the same biomedical, paternalistic approach. The patient subconsciously conforms to the ‘sick role’ that is expected of them. This implies subordination to the doctor’s authority, power and knowledge and this gap can be magnified on the basis of the patient’s class, gender and ethnicity. This is real.

The medical encounter, such as a GP consultation in the UK, is typically ‘top-down’. There is an intricate stage management of the various phases of the encounter, including information gathering, arrival at diagnosis and treatment decisions. A careful choreography that touches upon various levels of mutual understanding, cooperation, authority, subordination. This is permitted only under the ‘doctor’s gaze’, and the patient’s lived experience and subjectivity are still unseen, despite the empowerment rhetoric, and is only observable by what is said in the consultation.

The doctor controls which topics are initiated, which topics can be developed, what the patient’s contribution should be. All of this is entirely controlled, initiated and terminated by the doctor. The doctor then decides whether the patient’s complaint is ‘doctorable’, i.e. sufficiently legitimate as to warrant the patient being initiated on some kind of care pathway. The patient’s task is therefore to align themself to the doctor’s decision. The patient not only submits to, but is in league with, the doctor and knows what attitudes and behaviours to adopt. This is deeply embedded learning, or ‘members’ knowledge’, of subconscious behaviours in a medical encounter. This passivity is far from the ideal of patient-centred care. The patient’s ‘voice of the life world’ - their reality, their narrative - is effectively shut out by the doctor’s ‘voice of medicine’.

I repeat my earlier assertion that the concept of patient empowerment is an assumption. The passive role described above is the lived experience of most of the planet, bar a few assertive individuals in a handful of urban centres in a woefully small number of countries. The challenge in the design of Patient Voice research, therefore, should be to acknowledge that patient-centred care and patient empowerment are only concepts and do not reflect the realities of the majority of patients worldwide. For Patient Voice research to be meaningful, it needs to access the less empowered, the 99%.

Written by Mark Gibson

Lisbon, Portugal, December 2024