Creating cultures that truly involve patients

Patient involvement is nothing new, but adopting the principles within the pharmaceutical industry involves organisational change, writes Aaron Pond

‘Patient centricity’ seems to be a hot topic in industry at the moment, discussed with the same levels of passion and excitement we observed when ‘web 2.0’ was emerging.

But involving patients in the decision making process of the health system isn’t anything new – the drive towards patient involvement began decades ago with patient movements in mental health and infectious diseases making the case for “doing with” rather than “doing to” patients.

Like many issues, ideas relating to patient involvement continued to flow through the health system until they emerged as mainstream policy concepts: “nothing about me without me”‘ being an early articulation of the system perspective.

Patient involvement as a policy principle never quite crossed the chasm to pharmaceutical industry adoption as its concepts and ideas largely related to service provision, and the industry delivered products. But a number of things have happened to put patient involvement on the agenda of industry.

Firstly, commissioners now have a much wider concept of value than safety/efficacy of medicines – they want to understand how medicines contribute to services, and services to population health. Through this lens, the human dimensions of care, and how this relates to medicines, have as much relevance as the clinical characteristics.

Secondly, people expect more of a relationship with, and transparency from, the organisations that help them live their lives. Fashion brands are demonstrating responsible supply chains, food manufacturers are transforming practices to focus on health, energy companies are positively channeling consumer ideas about sustainability. Now the pharmaceutical industry needs to demonstrate a positive collaborative spirit to its stakeholders.

Thirdly, increasingly complex market environments are encouraging business strategy to focus on iterative and lean working. This way of thinking demands a greater understanding of customer wants, needs and preferences.

While in no way exhaustive, these three points give a sense of the force factors that are pointing great minds within the pharmaceutical industry to consider patient involvement.

To truly involve patients in the work of our industry, we need to be able to share decision making, share information and share power.

This requires changes to processes and mindsets. In other words, moving towards patient involvement requires a certain amount of organisational development.

This can be bottom-up or top-down. Endeavouring to change the way we work with patients is likely to be most effective when it meets in the middle, and a company starts to form its own culture around patient involvement.

While ‘culture’ is a hard concept to pin down, it is something that can be steered by business leaders and nurtured through change management.

Typically it starts with a clear articulation of the case for change, made highly relevant to the context of the audience, and delivered with passion and a curiosity for feedback.

Language and semantics are important, too. Our Access All Areas research demonstrated how people with health conditions have reservations about words such as, “empowerment”, “activation”, “journeys” and even “patients”. Finding the right language for the organisation, and the stakeholders that organisation works with, is an important step in developing a patient involvement culture.

So patient involvement is nothing new, but the need for patient involvement within the pharmaceutical industry is pressing. Many companies are making great strides towards involving people with health conditions within their work.

Genuine involvement requires sharing information, ideas, decision making and control. To truly share and achieve meaningful involvement, the company culture needs to be supportive. This is important because patient involvement advocates will likely be challenging processes, pushing boundaries and encouraging new mindsets.

This can be hard work, but work that can be sustained when a supportive culture is in place. Aurora firmly believes in ‘nothing for patients without patients’ – if you share this passion, then we’d love to hear from you.


1 Comment

| jacknohaterz

It’s exciting to see how principles of patient involvement, like client-centred product and service design embraced by other industries years ago, are finally gaining some serious traction within pharma. This isn’t without good reason: If pharma can successfully involve patients in a meaningful way which isn’t tokenistic, the rewards will be plentiful for all parties, whether they are patients, pharma or entire healthcare systems.

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