Over the last two decades, there has been a collective realisation of the power of engaging patients through patient partnerships. Patient centricity is now crucial in the world of pharma. This has led to massive wins for patients and patient groups resulting in improved healthcare service provision and patient outcomes in many instances.

Over my eight years as the chief executive of Sickle Cell Society, I have seen first-hand the impact that great patient partnerships can have. Our work with industry partners has supported patients in the UK to secure access to the first new treatment for sickle cell disease in nearly 30 years via NICE’s managed access scheme.

While NICE initially did not recommend that this medicine should be funded by the NHS, the real-world evidence and information the Sickle Cell Society was able to provide in collaboration with patients and families, healthcare professionals, as well as our industry partners led to NICE reversing this initial decision. The pipeline for new potential treatments for sickle cell is the best it has ever been, so going forward more effective partnerships will be necessary.

Patient advocacy, especially advocacy done in partnership with industry, is vital to improving access to innovative medicines. But not all partnerships are created equal, and only a proportion of the current approaches to patient engagement truly embrace the ethos of full partnership.  This is a fact I am acutely aware of through my work as a judge in this year’s Patient Partnership Index.
Fundamentally, great partnerships are partnerships of equals.

While pharmaceutical companies may have vastly different and expanded resources compared to many patient groups and organisations, the insight and lived experience of patient advocacy groups is often central to the success of many campaigns. Good collaboration is based on an understanding of where each partner brings value, and also a knowledge of your partner’s limitations.
For the full potential of a partnership to be realised, there must be open and transparent communication and a clear understanding of the role of each organisation in the partnership.

This year, I have been working as a judge for the Patient Partnership Index, a pro-bono index run by patient advocacy and communication experts OVID Health. My aim through this work is to highlight that patient organisations of any size can have effective and successful partnerships with pharmaceutical companies – partnerships which will ultimately benefit their patients.
On the flip side, I also want to encourage pharmaceutical companies and other industry bodies to fully recognise the capacity and capability of patient organisations when entering into partnerships, as well as valuing the unparalleled insights into living with rare diseases that charities like the Sickle Cell Society can provide to industry partners.

The Patient Partnership Index is an excellent way of showcasing the best examples of partnerships, while encouraging other organisations to take similar approaches and increase success. More good quality patient partnerships can never be a bad thing, please register to submit your examples! Entries close on 27 May 2022.

For more information about the Patient Partnership Index, or to register, visit patientpartnershipindex.co.uk/enter