Partnering with patients for the long haul

In this age of all things patient-centric, it is hard to believe that not that long ago….we lived in an era where patients were on the periphery and sometimes taken for granted, with their role often limited to providing study enrolment numbers. The emphasis was very much on nurturing the Pharma-Physician relationship, underpinned by a ‘doctor knows best’ sentiment.

That was of course before the digital transformation and explosive growth of social media, both of which have been catalysts to empower patients as they discover their effervescent and resounding voice. This newfound confidence and willingness to affirm themselves as the key stakeholder in their own healthcare has been the instigator of a seismic disruption, albeit a healthy and positive one in the transformed Pharma-Patient relationship.

So now that we are engaging more holistically with patients, are we doing enough? Is the patient-centricity story complete or can we still evolve further? To answer these questions, it’s important to consider how deeply rooted the notion of patient-centricity is in our industry and particularly our own organisations.

At O4, we like many others have embraced the myriad benefits that such engagement brings in the initial design and planning of our studies. Online support forums and networks, patient advocacy groups and patient focus groups are hugely beneficial initiatives in our toolkit. Patient focus groups in particular enable direct engagement with patients, obtaining their invaluable input into protocol development, PROs and eliciting the key issues for them in managing their disease. We focus on understanding the patient pathway, the practicalities from the patient’s perspective and minimising study burden for them.

After all, patients are the real experts when it comes to living with and being treated for a chronic or rare disease and as they have become increasingly invested in garnering knowledge about their condition, they have so much to offer in terms of product development.

For O4, this approach has enabled clinical protocols to become more patient-centred, consequently improving the patient experience, patient retention and preventing protocol amendments through patient insights.

Importantly, we don’t leave it there, we are in it for the long haul… we continue our dialogue with the patient throughout the study life cycle. By keeping our study participants updated on key milestones, sharing study facts, cascading results and seeking feedback, our patients tell us they feel valued and integral to the study.

On an industry level, when patient-centricity truly becomes intrinsic to an organisation’s culture and is championed by all, then the patient voice will shape every stage of clinical development, regulatory approval, and marketing.

O4 has found a particular affinity for patient centricity amidst our RWE studies, focusing on the patient’s real-life experience, monitoring their outcomes and quality of life. This area of research is expanding with increasing awareness of the importance of listening to and understanding the patients ‘lived experience’ so we can continue to learn and adapt, as many interventions will be used by patients for years to come.

It is only natural that when patients get involved, enjoy the experience and feel appreciated, they become strong advocates for future studies. Ultimately, this can only strengthen clinical research as confidence grows that it is a shared endeavour and has lasting benefits for us all.

It’s fair to say that we have come a long way on the patient-centricity journey and whilst we may want to pat ourselves on the back, there is still much more that can be achieved. Patients are certainly not going to let us rest on our laurels, nor should they, and what’s more, we are all the better for it.