Earlier this month, the International Federation of Pharmaceutical Manufacturers & Associations (IFPMA) issued new guidance for the pharmaceutical industry on how it interacts with patients and patient organisations, with the aim of safeguarding patient interests across the world.


When money or resources are involved in interactions, we must at all cost avoid the impression that patient organisations depend on one single company

Thomas Cueni, IFPMA

Put together in collaboration with the International Association for Patients’ Associations (IAPO), the Note for Guidance outlines best practice for interaction with patients, caregivers, and patient organisations, as well as advising on the design and implementation of patient support programs run by IFPMA members.


This latest publication aims to complement the 2019 IFPMA Code of Practice, the headline for which was a global ban on gifts to medical practitioners. The 2019 code also covered the promotion of pharmaceutical products more broadly, as well as interactions with healthcare professionals, medical institutions, and patient organisations.


Against a backdrop of increasing anxiety about the collection and use of patient data, the new advisory note lays out principles of interaction on how to protect the independence, privacy and integrity of patients, caregivers and patient organisations when they receive financial and non-financial support from companies and associations. It also provides best practice on what should be included in agreements and puts great emphasis on advising pharmaceutical companies and associations to carefully consider how and when to engage with patients and caregivers as individuals, as advisors, or as guest speakers at events and congresses.


“Trust and behaving with integrity when dealing with patient organisations is already included in the IFPMA Code,” stressed IFPMA director general and PharmaBoardroom contributor Thomas Cueni. “It is in the interests of all parties to use the new global guidelines,” he added. “When money or resources are involved in interactions, we must at all cost avoid the impression that patient organisations depend on one single company. A wide base of support increases the independence and credibility of all parties.”


IAPO CEO Kawaldip Sehmi added that, “the Guidance Note provides practical and actionable best practice to our patient organisations. Patients and patient groups play a crucial role in advocacy, education, and research, and it is essential to ensure they remain independent and interactions are transparent.” Sehmi noted that although industry funding of patient groups is common and necessary, it is essential to ensure that whatever the interaction and wherever it takes place in the world, the needs of patients are put first. “I support collaboration between patients’ organisations, and the pharmaceutical industry, as long as it is ethical and is in support of high-quality patient care,” he clarified.


Representatives of national patient organisations have also weighed in on the topic. “As many patient organisations work with pharma industry on various different levels – from knowledge sharing to financial support – it is key to shape those relationships in a transparent way. The IFPMA Note for Guidance on Patient Interactions will provide a common basis across countries for companies as well as patient organisations,” stated Andreas Herdt, vice chair of Adipositaschirurgie Selbsthilfe Deutschland e.V. in Germany.


Russell Williams, SVP of Mission Diabetes Canada added “As Patient Co-Chair of the APEC Biopharmaceutical Working Group on Ethics, I appreciate the outreach of the IFPMA regarding the Guidance for Interactions with Patient and Patient Organisations and I believe it will be helpful to all.”


To view the IFPMA Note for Guidance, click here.