Working with patients
What is a patient organisation?
Patient organisations can take many forms, but largely aim to improve the lives of people with a particular disease or medical condition. For example, they may raise public awareness of a condition or provide information and support to patients. They may also support patients’ families and carers, and often play a role in connecting or buddying people who are in similar situations. Patient organisations might also campaign for better standards of care and access to treatments for the patients they represent. Some patient organisations raise money to fund new research.
Patient organisations can vary significantly in terms of their size and structure. Some may have a paid workforce while others are run by volunteers. Patient organisations are not always registered health charities, although many are.
Many people will know someone who has turned to a patient organisation at some point in their life and the value they can bring at a time of difficulty.
Why does Pfizer work with patient organisations?
Working with patient organisations can help us have a better appreciation of the specific needs of patients and how we can better support these needs. As a science company who research and develop medicines, we believe that a deep understanding of the people who live with a disease or condition is essential if we are to appreciate how medicines fit into day-to-day life. Sometimes we might seek the advice and insights of those working within patient organisations so that we get this right. It can also help us improve our patient information and disease management programmes.
We provide charitable donations or sponsorships to support the independent work of patient organisations to help, or to advocate for, people affected by a particular condition. In addition, where there is a common purpose, we sometimes identify areas on which we are able to collaborate or partner on specific projects.
Patient organisations also often want and need to know about new medicines that might benefit the patients they represent. If they ask us for this information we are happy to provide it within the regulatory constraints we face.
How does Pfizer ensure transparency in its work with patient organisations?
Transparency is at the heart of our approach when working with patient organisations. Our systems and processes support high standards of compliance and governance, and there are high expectations on our staff to act with integrity.
In providing funding or working with patient organisations, Pfizer’s guiding principle is to ensure that the organisation’s independence is never compromised. If this is put at risk, then credibility starts to be lost on both sides and this helps no one. We feel passionately that relationships with patient organisations are both valuable and essential, and by operating with a high degree of transparency, we can be confident and proud of the relationships we have developed.
As a member of The Association of the British Pharmaceutical Industry (ABPI), we must declare a list of patient organisations to which we provide financial support and/or significant non-financial support, including a description of the nature of the support and its monetary value. For significant non-financial support which cannot be assigned a meaningful monetary value, we are required to describe clearly the non-monetary value that the organisation receives.
We are also required to provide a list of patient organisations we have engaged to provide significant contracted services, including a description of the nature of the services provided.
In addition, we disclose the payment of expenses relating to accommodation and travel (both in the UK and abroad) incurred by patient organisations in the course of their interaction with Pfizer. Our disclosure of expenses payments for patient organisations includes both out-of-pocket expenses reimbursed to patient groups, and expenses paid in advance by Pfizer.
We are always mindful of the potential to create an over-dependency on any funding we provide. That is why, wherever possible, we report the percentage of each patient organisation’s revenue that our funding makes up. However, there are times when this percentage may be higher than average. This might be due to a difficult fundraising climate, because an organisation is new or small in size, or perhaps experienced some unforeseen circumstances that impacted on its ability to attract income. Where this is the case, we actively encourage the organisation to seek and secure other sources of sustainable funding in line with the guidelines outlined in the ABPI Code of Practice.