In recent years, a lot of attention has been placed on the need to bring the pharmaceutical industry together with patient organisations, to ensure the patient voice is present in treatment development. As part of this trend, the Association of the British Pharmaceutical Industry (ABPI) organises quarterly meetings of the ‘Patient Organisation Forum’ to create mutual interest and shared understanding between these two stakeholders.
We at Findacure believe it is crucial for pharma and patient groups to partner to tackle the challenges of rare diseases, and as such, we have been a member of the Patient Organisation Forum for just under a year. Our Executive Director, Flóra, attended the most recent meeting in July to find out about recent initiatives in patient and public involvement (PPI) in the life sciences.
One great initiative is coming out of the National Institute for Health Research (NIHR) known as the Patient Research Ambassador Initiative (PRAI). This is aimed at embedding a patient-centred research culture in the NHS by recruiting Ambassadors to promote health research from a patient point of view. The Initiative hopes to eventually have one such Ambassador at each NHS Trust and care setting. You can find out more on their website and register to get involved here.
Another development shared was from the National Institute for Health and Care Excellence (NICE). After feedback surrounding the challenges patient organisations face interacting with NICE and the limited transparency of the impact this interaction has, NICE have launched a review of PPI in their guidance and standards programme. From August to October, they will be consulting with the public to get your input on how they are doing and what they could improve.
It was encouraging to hear how key governmental health bodies are looking to incorporate the patient voice into their work, to ensure research and treatments truly address patient need. What was even more encouraging was the passion of the individuals in the room, pushing for ever more patient involvement and ever more recognition of the patient voice. It is imperative to take advantage of these opportunities being created, for rare voices to be represented, to make sure these often overlooked conditions get the attention they deserve.