Patient Engagement: Closing the valueloop

Industry and patient advocates see progress on patient engagement very differently. That was a clear takeaway from last week's Patient Empowerment World Congress Europe conference in London.

Part of the problem is value demonstration. External assessments can only draw on what is publicly visible, which is largely engagement outputs such as awareness campaigns, rather than the outcomes of patient-focused medicines development. Yet outcomes are what matter. The real value of patient engagement lies in its influence on strategic and operational decisions that ultimately impact patient outcomes. As an industry we do not track these changes consistently, and even more rarely report them externally. The result is an incomplete picture that understates the contribution of patient engagement and does little to build trust with patient communities.

Closing the gap means demonstrating impact credibly and transparently. That raises two questions: what should we report, and where? The annual sustainability report is a natural home. Patient engagement is a key enabler of sustainable healthcare, in line with the UN Sustainable Development Goals. Reporting it there would subject it to the same governance and scrutiny as other material commitments whilst also making it visible to investors, regulators, partners and patients. But disclosure only builds trust if it is consistent and comparable across the industry. That requires shared definitions of meaningful outcomes, a common set of indicators and a commitment to track them over time. These must be co-developed with patient organisations, so the measures reflect what patients value. PFMD's metrics selector tool is a basis for this.

Early examples are emerging, with Ipsen reporting patient engagement indicators in its sustainability statement and Sanofi publishing an annual Patient Community Promise report against defined commitments. Work remains to be done to find an industry consensus on how to report this value and how to make it as visible and accessible to patient communities.

Other key takeaways

• Start at the margins. Involve diverse patients from the outset, before decisions are fixed, rather than relying on the easiest or most established voices. Only around 5% of people from diverse groups have taken part in medical research, even though they make up around 14% of the UK population.

• Recognise the hidden cost of participation. Preparation, admin and the emotional labour of repeatedly sharing lived experience often go unacknowledged. Fair payment should be the baseline, not the endpoint. It should be agreed in writing and designed so it doesn't put people's benefits at risk.

• Treat lived experience as expertise. Patients should hold roles with real influence, from publication co-authorship to policy. Patient advocacy groups should be recognised as expert partners, yet 7 in 10 clinicians surveyed were unaware of their local group.

• Make information usable. Plain language summaries nearly tripled understanding of benefits and harms (53% vs 18%). The MHRA's Improving Patient Information programme is moving towards multi-format, digital-first medicines information.