The Patient Voice agenda is based on two prevailing assumptions that do not reflect the lived experience of the majority of patients worldwide. There is a widening gulf between what researchers think they know about patient insights and what these are in reality. If this is not acknowledged and addressed, there is not much value in Patient Voice research.

The emphasis on the Patient Voice is influenced by social, regulatory, and industry trends which rest on the concepts (or assumptions) of patient-centred care and patient empowerment. The received wisdom is that empowerment is enabled by increased access to quality information, such as through the internet and a stronger focus on patient-centred care. These form a sea change that has transformed individual patients into more informed and active participants in their healthcare decisions.

The pharmaceutical industry takes this at face value and assumes that patients possess valuable insights and preferences that can inform drug development and improve health outcomes. It recognises that aligning treatments with patient needs and preferences boosts acceptance and adherence, which, in turn, drives demand and market success. Then, regulatory frameworks, such as a raft of guidance from FDA, also stress the importance of incorporating patient perspectives in drug development. All good so far, in theory.

This is a significant cultural shift that elevates the status of patients from passive research subjects to important partners, where their experiences and narratives are valued as essential contributions to the development of new therapies. This has become politically important, as patients now have a seat at the table of drug development cycles, becoming important stakeholders, alongside providers, payers, policymakers, shareholders, etc.  

The notion of the Patient Voice is anchored on philosophies around patient-centred care. This assumes that there has been a shift away from the doctor-centred biomedical model. This focused solely on physical disease aspects and overlooked patients' social and psychological experiences. According to this prevailing view - rarely questioned - heath care provision has moved to a patient-centred approach. This modern approach redefines patients as active partners, emphasising three core values:

• addressing individual needs and experiences

• encouraging patient participation in care

• fostering strong patient-doctor partnerships through empathy, effective communication and emotional intelligence.

Patient-centred care seeks to understand each patient's unique perspective and context, ensuring that treatment decisions align with their values through shared decision-making. This means that doctors need to treat patients holistically, considering factors like illness history, emotional distress, culture, and socioeconomic status. Cutting-edge drug development is wedded to the assumption that patient-centred care is a widespread reality: you can’t have personalised medicine without it.

The Patient Voice rests on the myth of widespread Patient Empowerment

If the Patient Voice rests on assumptions around patient-centred care, then the latter is based on a whole range of assumptions around the ‘Empowered Patient’ in wider healthcare provision. This is the idea, circulating for decades in policymaking around the world, that patients are increasingly viewed as consumers with the right to choose their medical care, similar to decisions about their own education or lifestyle, such as what food to eat, what information to consume or what vehicle to drive. This marks a shift in the perception of the traditional paternalism of the healthcare professions, moving beyond merely treating illness.

In chronic disease management, partnership and self-management are essential. This empowers individuals to handle symptoms, treatments, and lifestyle changes, forming the foundation of the ‘expert patient’ model. This approach focuses on improving treatment adherence and enabling patients to use their skills and resources to control their health. By fostering active participation and collaboration, healthcare providers support better health outcomes and create a more cooperative and effective healthcare environment.

This is a nice idea, and, in many cases, this is precisely how some patients approach health care: in partnership with their doctor, discussing decisions, bringing their lived experiences to the fore and expecting this to be taken seriously by their doctors. In countries like the UK or USA, these patients are usually white, have higher incomes, higher education, a socially prestigious profession, middle class and above, living in urban centres or suburbia. They also draw upon a whole range of resources in their own backgrounds, such as economic and cultural capital, confidence and assertiveness to feel comfortable enough to take an active role in their own healthcare decisions, rather than being passive recipients of them. This is the type of patient that becomes a patient advocate, engages actively in patient communities, real or virtual, and takes part in Patient Voice research projects.

This means that Patient Voice may not be diverse enough. If Patient Voice research only include patients from this empowered demographic, representing a tiny stratum of our societies, then it is exclusive, not inclusive. It offers a skewed view of what a typical patient is. It does not reflect the diversity of experience of the majority of people in our societies, where there is a real and growing empowerment gap.

In the next article we will discuss what kind of person is not empowered in terms of their healthcare.

Written by Mark Gibson

Leeds, United Kingdom, December 2024