Hard to reach: culture, diversity and voices

by Rosanna Forrest . October 2022

We attended the Patient Centricity and Engagement conference earlier this year to hear from the leading pharmaceutical companies on how they are striving for patient centricity.

Diversifying the voices heard

We heard from several companies about how they are trying to diversify their patient panels who provide guidance across various projects, such as disease awareness or clinical trial recruitment. While patient panels are becoming more and more common, the absence of diversity means there is a distinct lack of varied viewpoints and experiences.

One pharmaceutical company have looked to navigate this challenge by leveraging social media to source contributors for its country insights panel, meaning more people hear about the opportunity to share their lived experience. They are now on their way to creating a virtual insights panel that has contributors from across the UK and from differing cultural, socioeconomic, and religious backgrounds.

Another company shared how they are finding it challenging to reach those who don’t tend to engage with the patient groups as this is their main route to speaking with the patient community. However, a patient representative outlined that while seeking those who are ‘hard to reach’, the voices of those who are engaged need to talk loudly for those who are suffering quietly. Engaging with those people in the first instance will ensure programmes can be successful and iterations can be made once more of the population become engaged.

It’s not just patients who are ‘hard to reach’

Instilling patient-centric approaches within teams and across a whole organisation requires a behaviour and mindset change. While many companies talk about being patient-centric, we heard that engaging cross-functional colleagues in patient engagement or activation programmes can be difficult and a cultural shift is needed which takes time.

The companies that saw successful patient engagement projects launched shared that they had key ambassadors for patient-centric work outside of the patient relations team and they were included in cross-functional working for programmes, whether it was in medical, compliance or marketing. These key ambassadors continuing to talk actively about involving patients and interrogate projects to ensure patient experience and guidance has been sought meant that other brand teams were then considering approaching patient programmes in a more dynamic and holistic way.

Driving change with patients and organisations

The conference left us with three main areas for reflection. To drive change and engage those who are ‘hard to reach’, we need to consider:

  • Organisational culture and structure take time to change, however it is important that patient engagement runs through the heart of companies, and those that are hesitant are brought along on the journey
  • People living with the conditions should set the agenda and drive conversations – if a diverse group of patients aren’t included in the co-creation of patient engagement programmes, then the programme is unlikely to create change for, or activate, the target population
  • To reach those who are deemed to be ‘hard to reach’, whether it’s patients or within an organisation, ambassadors and louder voices need to speak up, create the initial change and bring the less-engaged along on the journey with them

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