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How can pharma build genuine partnerships with patient communities?

January 19, 2026 | patient advocacy, patient engagement 

Patient engagement is not optional in pharma – it’s integral. Meaningful partnerships with patients, caregivers and advocates must shape every stage of healthcare and medicines development, driving better outcomes, equity and trust.

That was the clear message from my recent interview with Trishna Bharadia, an internationally recognized health advocate and patient engagement consultant who has spent over 15 years helping organizations incorporate patient perspectives into healthcare, research and medicines development.

Amiculum meets Trishna Bharadia, patient engagement and health advocate

Trishna’s journey into patient advocacy began with a life-changing diagnosis of multiple sclerosis (MS) in 2008, and it was this personal experience with chronic illness that inspired her to volunteer with patient groups. Over the past 15 years, her work has grown to encompass a wide range of roles culminating in establishing her own consultancy (The Spark Global), collaborating with stakeholders from pharma to digital health, and lecturing at King’s College London.

Her passion? Embedding the patient voice in every aspect of healthcare, from strategy to scientific publications, and championing equity, diversity and inclusion (EDI) at every turn.

What follows are the most important insights from our conversation – practical, actionable and deeply human.

What does patient advocacy really mean for pharma?

Trishna’s answer was clear: patient advocacy should be at the very heart of everything pharma does, not just in areas like medical affairs, but across every function.

“Ultimately, pharma exists to improve patient outcomes, so patient advocacy isn’t just a ‘nice-to-have’, it’s essential for developing relevant, accepted and effective treatments.”

The goal isn’t simply to consult patients; it’s to create meaningful partnerships and shared goals that inform the medicines development lifecycle end-to-end. Trishna referenced the ‘Ladder of Participation’, which helps organizations to determine the right level of patient involvement for each project.

And let’s not ignore the commercial value: involving patients leads to better treatments, improved adherence, faster clinical trials and a more informed patient community. It’s a win-win for both pharma and patients.

Crucially, ‘the patient voice’ is not a single, homogenous group. It includes patients, caregivers and patient group representatives from all walks of life, each bringing unique perspectives. True engagement means ensuring all these voices are heard.

Why should pharma involve patients early in drug development?

How early is ‘early’? Earlier than you think, and then earlier still. Involvement should start in R&D when priorities are being decided, long before protocol design, to reap the greatest benefits.

Trishna shared an example of how, in MS research, clinical trials traditionally focused on walking ability. But when you ask patients what matters most for their independence, upper limb function often tops the list – affecting dressing, eating and personal care. Only recently have upper limb function outcomes been incorporated as primary endpoints in trials, helped by strong patient-led, multi-stakeholder efforts.

The key takeaways? Early engagement yields:

  • Relevant endpoints: reflecting lived priorities
  • Less burdensome study designs: boosting recruitment and retention
  • More representative cohorts and inclusive treatments
  • Trust and transparency: empowering shared decision-making

How can pharma address EDI in patient engagement?

EDI isn’t a tick-box exercise, it’s critical to scientific validity and the real-world success of therapies. Trishna pointed out that diversity and inclusion go far beyond gender and ethnicity. Age, comorbidities, disability and even rural versus urban settings all matter. Each disease area has its own definition of what ‘representative’ looks like, so strategies must be tailored accordingly. Start with the right voices in the room, and you’ll be able to achieve representation throughout trial design, recruitment and outcomes.

Practical ways to address EDI in patient engagement:

  • Compensate fairly: patients shouldn’t have to self-fund participation, especially when working with industry in countries where remuneration is permitted. It’s not just those who can afford to volunteer who should get a seat at the table
  • Offer flexibility: scheduling, formats and hybrid options can help reduce barriers
  • Provide training and support: empower participation, don’t assume readiness
  • Separate EDI in patient engagement from EDI in trials: clinical trials have distinct operational barriers (eligibility criteria, travel, time, digital tools) that need bespoke approaches

What role will artificial intelligence (AI) play in patient advocacy and healthcare?

We touched on the opportunities and risks of AI for patients this year and beyond. Trishna likened AI to the early days of ‘Dr Google’, full of potential, but also pitfalls.

Patients are eager to use AI to better understand their health, but there’s a real need for education around privacy, safe use and the dangers of misinformation.

Still, the possibilities are exciting: faster diagnoses, personalized care and 24/7 support. But as with any new technology, we need guardrails and a learning curve, just as we did with internet search engines. Patients and professionals will need to learn new skills to use AI well. Done right, AI can enhance equity, speed and personalization across research and care.

Quick-fire insights

To wrap up, I asked Trishna a few rapid-fire questions:

  • Who inspires you in patient advocacy? Too many to name! Every person or organization fighting for patients is an inspiration, especially those balancing advocacy with their own health challenges
  • What’s one thing pharma or healthcare communications agencies get wrong? Misunderstanding compliance as a barrier, rather than an enabler, for fair patient engagement. And not recognizing the diversity within the patient stakeholder group
  • A quick win for agencies? Don’t wait for clients to ask about patient involvement. Proactively engage with patient advocates – it will enrich your strategy and show your commitment to patient-centred communications

Of course, I couldn’t let Trishna go without asking about her time on TV in Strictly Come Dancing! In 2015, she was one of six non-celebrities chosen for a special edition, thanks to her advocacy work. Dancing with a professional, she not only fulfilled a dream but also used the platform to raise awareness about MS, especially within the South Asian community. Her experience sparked conversations and helped break down myths about chronic illness.

We don’t give up, because we know there’s always more to do, and that’s what drives me forward – Trishna Bharadia

What practical steps can pharma and agencies take today to improve patient advocacy?

  1. Co-produce from the start
    Involve patients before protocol design.
  2. Identify and engage patients, caregivers and patient group reps
    Define the right expertise for each activity.
  3. Make EDI disease-specific
    Write a clear definition of which patients are representative of a particular condition, and tailor engagement and recruitment strategies accordingly.
  4. Build equitable engagement infrastructures
    Budget for fair remuneration, offer flexible formats and provide training/support.
  5. Set AI guardrails
    Create patient-friendly guidance on safe usage, privacy and how to verify information, while exploring responsible AI use for diagnosis, support and literature synthesis.

Final thoughts

Talking with Trishna was truly inspiring. Her insights remind us that patient advocacy isn’t just about ticking boxes, it’s about genuine partnership, diversity and always keeping the patient at the centre. As we look to the future, let’s make sure the patient voice is not just heard, but truly valued in every aspect of healthcare.

Watch the full interview with Trishna on our blog page

 

This content was provided by Amiculum

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