29 - Amplifying the ask of patient communities

How to be truly ‘patient-centric’ is a fundamental question we all must answer. How do we transform what could become an intangible phrase into meaningful behaviour?

It isn’t something that can happen overnight and what’s right for one workplace may not be right for another. But there are common principles that can guide us. It’s about recognising every patient as a person; that people can’t be defined by an illness. We must walk in people’s shoes, take time to listen, understand what matters to them and orientate our decisions around their priorities, not our assumptions.
Take clinical trials. If we can recruit more patients and faster, then we can accelerate research and get new treatments to patients quicker. The best way to do this is just ask – are our protocols looking at the right endpoints? What stops you from joining a clinical trial? Or makes it a poor experience? We are working with patients and the National Institute of Health Research to answer these questions and design trials that meet clinical and patient need.

But what if we can’t speak directly to patients? Patient groups play a major role in bridging the gap, connecting the NHS and life sciences industry with the patients they’re here to serve. Without them, we would struggle to be meaningful, at risk of working in a vacuum, developing interventions that don’t deliver what people actually need. I believe this must be a partnership rather than a transactional relationship, achieved by authenticity, transparency and a mutual respect for each other’s independence, goals and challenges.

Right now, this matters more than ever. With COVID-19, we face one of the greatest health challenges ever known. It is crucial we keep patient groups appraised of our progress against the virus so they have the most up-to-date information to share.
But while we are – quite rightly – focused on the virus, there are other patients who still need support. Industry can amplify the asks of patient communities as well as seeking their guidance on what more we can do.

There is no doubt that having one, central goal is pulling everyone together like never before. I’ve seen huge efforts to keep patients out of hospital through the use of community-based medicine and clinical trials where patients can participate from home; I know of video consultations which have sped up access to a specialist and my own colleagues are volunteering to drop off medication at vulnerable patients’ homes. I sincerely hope that some of the changes born out of necessity come with us into the ‘new normal’.

That is why having a Patient Partnership Index, developed with patient groups and judged independently, can keep us moving forwards, sharing best practice and providing a valuable steer on what works best. And this approach of working together, learning from each other as we go, underpinned by a genuine desire to do our best is, for me, at the heart of putting patients first.