Empower or fall behind: why true patient engagement is pharma’s competitive edge

The term Patient Activation, defined as ‘an individual’s knowledge, skill and confidence for managing their health’, has been bandied about for some time, used predominantly by healthcare organisations. It’s often mentioned in the context of patients taking more control and responsibility for their own health outcomes. However, patient activation is not the same as patient engagement.

Having worked in life sciences for over a decade, we know many patients are already proactively managing their health. Those with long-term conditions, rare diseases, congenital illnesses, both pre-and post-diagnosis, are often highly knowledgeable about their health needs and where the industry can support them.

At Kanga Health, a digital agency specialising in patient and HCP engagement, we get close to customers’ needs along their treatment pathway. Engaging patients and co-creating tools and strategies with them, has been central to many successful patient programmes.

Patient engagement is one of the most reliable ways to drive long-term health outcomes and a critical benchmark for supporting healthcare systems. As health services face growing demand, ageing populations and limited resources, patient engagement is no longer optional – it’s essential to the future of effective care.

It’s argued that patients with preventable conditions like obesity and hypertension need to be ‘activated’ – encouraging better health literacy and positive health-related lifestyle advice. While they may be less likely to seek help or follow advice, they still want knowledge and solutions, just like any customer. Meanwhile, undiagnosed patients and those with debilitating symptoms are often naturally more driven to seek support.

To be effective, life sciences companies and healthcare organisations must tailor their engagement to diverse needs and stages of readiness.

In today’s omnichannel world, companies can meet patients where they are – delivering timely content, tools and support across preferred channels for more personal, impactful engagement. Effective examples include:

• Symptom checkers for productive doctor discussions
• Explainer tools supporting newly diagnosed patients
• Peer-led videos featuring patient stories and coping strategies
• Digital self-assessment tools co-designed with patient advocacy groups
• Online self-management hubs offering personalised care content and symptom-tracking
• Mobile apps to support ongoing treatment/care pathways.

A key component of successful engagement is co-creation with patients and HCPs directly – before developing solutions. A proven approach to gather powerful, first-hand experiences and knowledge. The BJCN, October 2024, emphasised that ‘empowering patients through co-created self-management strategies (eg, digital tools) is essential to managing long-term conditions and reducing system strain’. It notes that co-creation’s role in sustaining engagement and improving health literacy is about ‘shared decision-making and motivational interviewing, enabling patients to feel heard and respected’, enhancing patient autonomy and aligning care to individual values and preferences.

In an award-winning project, Kanga supported a biotech company focused on a rare and potentially fatal condition. During a co-creation workshop, international patients met. Two individuals – of similar ages and diagnoses – presented a striking contrast. One had just finished a football match; the other appeared seriously unwell. Both were on the same treatment. The difference? One was engaged with his own health, had connected with clinics and was managing his symptoms. The other had remained reliant on others and was struggling as a result.

That moment sparked a core theme for the programme: patient empowerment through shared knowledge with tailored information/tools at various stages of their journey. It also shaped the broader strategy – not just to educate, but to engage and allow patients to be part of the support/service design. The resulting programme delivered:

• Patients who better understood their condition and treatment
• Improved therapy adherence
• Increased symptom awareness, shortening diagnosis timelines by years.

Here are some identified principles for effective patient engagement:

1. Start with co-creation, backed up (but not replaced) by quantitative methods such as surveys. Embedding patients at the beginning, not consulted as an afterthought.
2. Tailor by engagement level. Some patients need foundational support; others want to lead their own care. Design accordingly.
3. Use peer voices. Patients listen to other patients. Authentic, relatable stories drive belief and behaviour change.
4. Build in compliance. Co-creation with patients can be fully compliant – with the right contracts, protocols and governance in place.
5. Think omnichannel and understand the patients’ need for support throughout their journey – from first symptoms to diagnosis and beyond.