Why Patients Must Be in the Driver’s Seat

Michelle Warner is co-founder of The Patient Project, dedicating a wealth of experience in the pharmaceutical industry to amplifying patients' voices in the development and provision of healthcare.

The Necessity and Value of Patient Engagement

I was recently asked a deceptively simple question: “Do people who make cars actually drive them?” My instinctive answer was yes, of course. But the real insight came with the follow-up comment: “It’s the lived experience of drivers that shapes what the car industry needs to deliver”.

That analogy hit home.

The development of medicines, that patients truly need and want, relies on working with and for patients. Lived experiences shaping better solutions, together. Whilst the pharmaceutical industry recognises the need for active engagement (and there is a lot of talk about doing so), variance is high. As evidenced by Patient View’s Corporate Reputation of Pharma, patient organisations perceive clear differences between and within companies as well as conditions. Involving patients from time to time is tokenistic engagement. All companies must partner with patients over the long-term and work towards shared goals; lasting commitment that builds trust, drives ambition and success for all. This means investing in patient engagement expertise, prioritising budgets and demonstrating value. Yes, value means profits for pharma, but more importantly, it means improvements in outcomes that matter to patients. That’s the real win.

But I’m often asked: “How do we know?” and “What do you mean by value?”

Here’s a few examples of what it looks like in practice:

• Patient-designed trials: When patients help shape clinical trials, the endpoints reflect what truly matters to them. This leads to more relevant data, better regulatory alignment, and ultimately, more valuable treatments.

  
  

• Co-authored publications: Patients as authors help make complex data understandable. This empowers communities with knowledge and supports informed decision-making, including around treatments.

  
  

• Co-created education: Trusted, accessible disease education – especially when shared in forums and via patient groups – raises awareness, builds support networks and drives better understanding of treatment options.

From Languages to Life Sciences

It’s funny to think I’ve spent most of my career in life sciences, given my degree was in French and Spanish. I stumbled into pharma by chance – house-hunting led to a conversation with someone in the industry, and curiosity took over. I tagged along to a few meetings, gave it a try, and the rest is history.

Over 30 years in just two companies, I moved from sales to marketing, then into global medical and patient affairs. The work was intense – especially in global roles with scientific congresses and planning cycles. My days were packed with meetings across R&D, communications, publications, and local affiliates. I worked with agencies, advocacy groups, and clinical experts, with patients as my ‘North Star’. I loved every one of those 30+ years, but big companies move slowly – and I became impatient – so it was time for a change!

The Patient Project: Small Team, Big Ambitions

Together with my amazing partner, Sian Feller, we launched The Patient Project in 2023. Just the two of us, working on 2–3 projects at a time to make a meaningful difference with and for patients.

Right now, we’re partnering with:

• A biopharma company seeking deeper understanding of patient needs and pain points.

  
  

• A MedTech start-up aiming to make real-world data accessible for research.

  
  

• The UK clinical trials registry, focused on transparency and data access for patients and researchers.

We do it all – planning, proposals, podcasts, focus groups, conferences, contracts, financials, and more. And every day, we prioritise our caregiving roles, both supporting parents living with dementia.

Carrying the Change

Sian and I both joined ISPEP in 2024 to support the patient engagement movement. As Patient Engagement Professionals, our challenge is to carry the change – to raise the bar with bold ambition and set new standards that accelerate progress.

We're all in. Are you?