Being truly patient-centric

Why is the Patient Partnership Index 2020 the right initiative at this time?

JP: More and more companies and organisations are starting to work together or increasing their collaborations; we need to highlight this and share best practice. I’ll be looking for actionable insights and examples of how people are focusing on patient safety and an ethical approach. The Patient Partnership Index will help pharmaceutical companies know where they stand – how do their efforts measure up in comparison to others?

RD: The Patient Partnership Index 2020 is timely, it is an opportunity to shine a light on the positive, best practice relationships between the pharmaceutical and biotech industry and the voluntary sector. These relationships are happening more and more and can be incredibly mutually beneficial to the organisations and to patients. We can all learn from successful and fruitful partnerships.

What does ‘patient-centricity’ mean in the context of communications and advocacy?

JP: Patient safety must always be the priority, so a patient-centric approach should always consider this and assess any unintended consequences of communications and engagement. Patient-centricity also means patient and public involvement in the design as well as the delivery of communications and advocacy work.

RD: ‘Nothing about us without us’ sounds cliché but it is an important principle. Patients and patient groups should be involved in all aspects of work that is about them or impacts on them.

What key learnings do you hope will come out from the Patient Partnership Index?

JP: It will be good to get an understanding of what companies are and are not doing and supporting them on what they feel they’re missing. RD: I hope the Patient Partnership Index showcases what has worked in different disease areas and what can be translated or transposed into other areas. No two organisations or sectors are identical, but I hope we can establish principles or guidance for what good patient partnership work looks like.

Describe what a good partnership between pharma and patient organisation looks like, in no more than one Tweet.

JP: Co-production from start to end, with agreement and acknowledgment of both parties’ needs and expectations. A partnership which empowers the patient and addresses unmet needs.

RD: Great partnerships between pharmaceutical companies and patient organisations start by involving patients at the start and at every significant point thereafter. Content is co-created by patients for patients.

What impact do you think COVID-19 will have on how pharma and biotech companies work and communicate with patient organisations?

JP: Working during COVID has forced a revolution in using digital platforms, replacing face-to-face communication. Whilst this has its own challenges, we no longer need to ask patient organisations to physically attend meetings, which should open up possibilities. The challenge though is to ensure patient representatives who don’t have access to technology are not left out.

RD: COVID-19 took most organisations by surprise. It has taken a few weeks for everyone to get their heads around the implications. Many pharma and biotech companies have been working constructively with patient organisations to provide much needed clarity and information to patients, as well as grants to enable vital work to continue at a time of unprecedented demand.