I have been fortunate to have been involved with a variety of patient communications events in the first quarter of 2025 that have brought together pharma, patient advocates and healthcare professionals.

Despite their breadth of focus, these have delivered some common themes that are worth recognising when considering our interactions and engagement with patients in healthcare communications. All are grounded on the undeniable premise that in transforming the healthcare landscape, better outcomes are achieved when patients are at the heart of the strategy – from clinical trial design to digital engagement.

Our patient engagement aims need to be much more than a corporate tick box exercise with a ‘the patient is the centre of everything we do’ style statement. It is about truly partnering with people who live with the conditions and growing our understanding of their everyday lives. Listening and integrating patient narratives at every phase of our work, from early drug discovery to beyond patent expiry, not only builds mutual respect, but also catalyses improvements in all our activities. This needs trust and transparency in our actions and an ongoing commitment to co-creation. It’s not about just engaging with the patient, it is about co-creating with patients, making them integral at every stage. To deliver this there need to be honest conversations across organisations that are supported by senior management, to ensure every stakeholder and agency are aligned with this goal.

Patient advocacy groups are valuable strategic partners for us. But it must be remembered that insights from the wider patient community are also important, as advocacy groups may only represent a specific cohort or viewpoint. Enhancing diversity in our approach necessitates reaching across the spectrum of patients to ensure we recognise the nuances that will exist. Working with any patient community or advocacy group has challenges that can inadvertently lead to bad feelings if they are not managed with our partner’s perspective in mind. Any interaction needs careful planning and, again, honest communication. For example, proper ‘entry and exit’ strategies are important, especially considering the potential consequence of any drug development setbacks, to ensure we never create a perception that patients have been left in the lurch if an organisation needs to curtail activity.

Navigating the compliance and regulatory aspects of partnering with patients needs clear briefings, stringent guidelines and open dialogue about what constitutes promotion versus appropriate engagement. However, these challenges should not be used as a barrier. With all internal stakeholders engaged early and aligned to the goal, we should be able to manage our patient interactions with the same confidence we do all our activity.

Early involvement of the patient community is also an important component for improved outcomes. Improved trial design, recruitment rates and validity of trial outcomes are just some examples where early engagement in the clinical programme is beneficial. Similarly, at the regulatory and reimbursement stage, an existing partnership with the patient community that is already on the journey with you is much more productive than one hurriedly established when hurdles are experienced.

The authentic voice of the patient in relation to non-promotional communication objectives is incredibly powerful. There are many examples: some are award-winning, but many more are less prolific, although equally as important to learn from. These have demonstrated the impact of the patient voice in areas from the destigmatisation of HIV to engaging hard-to-reach communities in cancer. Of course, social media has become a critical channel for the patient voice and the rise of the patient influencer – real people sharing authentic, lived experiences on platforms like TikTok and Instagram – are breaking down the traditional barriers of healthcare communications. In utilising influencers in a non-promotional setting, it is important we recognise they are not our spokespeople – they are trusted community members whose credibility and the authenticity of their message are enhanced when our corporate involvement is transparent. By following robust compliance measures and declaring sponsorships clearly, we can harness the power of this digital storytelling, without compromising on integrity.

Genuine partnership and co-creation with the patient community foster programmes that are innovative, resilient and truly patient-centric; with every activity – from clinical trials to online communications – reflecting the real, lived experiences of those with the condition. However, we need to get better at valuing that input at all levels throughout our organisations, ensuring it is integral to everything we do. We need to continue to improve our measurement and evaluation techniques to demonstrate the return on engagement and that ultimate impact of return on investment. And, we need to view our partnership with our patients as one for life, not just an activity.