• by Susan Manber , November 12, 2024

It’s well known that the United States spends the most on healthcare compared to other countries, both in absolute dollars and as a percentage of gross domestic product. Yet, the U.S. ranks as the worst performer among 10 developed nations in critical areas of healthcare, including access, quality of care, and outcomes, according to a new report from The Commonwealth Fund. In fact, the overall health of Americans not only isn’t improving, but American life expectancy has declined.

To address the disconnect between expenditure and performance, pharmaceutical leaders often talk about how their organizations have prioritized patient centricity to drive better health outcomes. Still, more than 70% of U.S. adults say the healthcare system fails them in some way, according to a survey from the Harris Poll. These failures are particularly acute in underserved Black, brown and rural populations. 

So why isn’t the American healthcare system achieving greater patient centricity? Part of the problem may be that the current patient-centricity model — which is designed to surround a patient — isn’t the same as truly being patient-first and letting the patient lead.

To address the disconnect, it’s worthwhile to engage with patient advocacy groups, a powerful but often underused resource. All too often, the pharma industry reaches out to the patient community to vet solutions they’ve already developed. By starting with the patient community and asking what they see as the biggest unmet needs they want industry to address, we will unlock much more powerful solutions by co-creating and designing products, services, tools, and content with them — not just for them.

We must engage patient advocacy, patient ambassadors, and patient influencers with an understanding that they aren’t the same thing. Pharma can meaningfully increase the relevance and credibility of messaging, content, and platforms by thoughtfully and appropriately listening to these different patient voices for guidance on clinical research protocols and commercial marketing programs.

It’s also important to recognize that patient advocacy groups are not monolithic — many of these groups were started as not-for-profit 501(c)(3)s based on varying but specific goals: focusing on patient education, funding clinical research, lobbying public policy, etc. Pharma companies will want to be choiceful on who and when to engage. Patient advocacy’s work is always non-branded and non-promotional, has enormous trust equity, and is often where people turn first for credible advice.

Despite incredible scientific advances in the last decade, we can still tell you more about a patient’s outcome by their ZIP code than their genetic code, and we are out to change that. Rather than dictating to patients, perhaps we need to shift the paradigm by harnessing patient advocacy’s core belief: “Nothing for us without us.” Perhaps then we can make meaningful progress.

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