Rearranging the deckchairs won’t cut it: Lived experience must drive health policy decisions

Boehringer Ingelheim has unveiled a white paper at a high-level roundtable during the United Nations General Assembly (UNGA) in New York. It addresses growing calls, both in Australia and internationally, for health systems to move beyond symbolic consultation and embed lived experience as a core driver of policy and funding decisions.

Featuring contributions from Australian patient leaders Tanya Hall (Hearts4Heart), Christine Cockburn (Rare Cancers Australia), and a case study from Kidney Health Australia, the white paper Real Voices, Better Choices elevates Australia’s unique challenges, including rural access, rare disease equity, and multicultural health needs, into global policy conversations.

“This white paper is not just a call to action – it’s a blueprint for deeply integrating lived experience into health system design and reform,” said Ed Hollywood, General Manager of Boehringer Ingelheim ANZ.

“It challenges the status quo and lays out a vision for structural change. Patients are not an afterthought – they are experts. We will have a stronger health system if we embed lived experience in how we design, evaluate, and fund healthcare.”

The launch coincides with the upcoming final report from the Implementation Advisory Group’s (IAG) on the Health Technology Assessment (HTA) Review recommendations. The global white paper mirrors the review’s emphasis on enhanced consumer engagement, transparency, and the integration of patient experience into decision-making.

“The white paper supports the urgency in Australia, evidenced in the HTA review, to move beyond talk to real changes to health system design, delivery and funding that yields tangible benefits to patients,” Hollywood added. “This means going beyond simply ‘rearranging the deckchairs’ to transforming governments’ willingness to pay for innovative life-saving medicines that patients are demanding access to.”

The white paper urges policymakers to develop legal frameworks and implement initiatives that formalize the participation of people with lived experience in policy discussions, support collaboration with and between advocacy organisations with adequate budgets, and embed clear, transparent decision-making processes that close the feedback loop so people with lived experience can see how their input shapes outcomes.

Boehringer Ingelheim was recently ranked the #1 company in the 2024 PatientView Corporate Reputation of Pharma report, based on feedback from 79 patient organisations across Australia and New Zealand. The company led across key indicators including patient centricity, integrity, and support for long-term strategic goals.

“We’re proud of the recognition, but more importantly, we’re proud of the relationships behind it,” said Hollywood. “Amplifying the voice of patients is just half the battle. The key is to not just listen, but to act. This is an ongoing process that Boehringer is uniquely well positioned to drive as a family-owned independent company that can make, and deliver, on generational commitments.”

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